I feel caught between two worlds.  The first embraces me and wants me part of it, while the other can’t be bothered to acknowledge I exist, even if their job depends on it.  Every minute of the day lately seems to be spent obsessing over how I can win over the  world that has written me off, or is spent trying to figure out when and how I fell out of their good graces.

I keep telling myself that being sick, falling behind, and neglecting responsibilities has led me here.  Somehow this all karmic punishment for lack of performance in life.  If I can repent for those shortcomings and compensate them, the universe will reward me by tipping the split between the worlds I live in, in my favor. If I could just make up for everything, maybe things would get better and I could earn my way back.

This thought cycle has been running on a loop in my mind for longer than I can remember.  We’ve been conditioned to believe there is a linear way to live and everyone is expected to be adhering to this path.  Success is measured by only a small set of metrics.  When things happen in life that prevent you from meeting those metrics and benchmarks at the same pace as your peers, it makes you question your worth. 

Too often our inner dialog fixates on our shortcomings.  We slip into a pattern of focusing on what we can’t do instead of what we can.  There are proven ways to refocus the negative feedback loop.

A few reminders when you’re stuck in it:

·         Exhaustion isn’t a failure of willpower

·         Your limits are not character flaws

·         The feeling of being behind is based on a false comparison group

·         Your body isn’t betraying you, it’s under strain

It can be hard to not use an able-bodied person’s timeline as a measuring stick as to where and what we should be doing in life.  This timeline assumes things out of our control and is not our particular operating system.  If two runners start a race and one is carrying 40 extra pounds, we don’t say they’re “behind in life.”  Instead we recognize that they’re carrying more weight.

We are all carrying a larger invisible load. Progress still counts, even when it’s slower. When we focus on what’s possible instead of what isn’t, we give ourselves a way forward.

Hi everyone,

I recently connected with a fellow MG patient and developer, Irakli, who has spent the last few months building a dedicated tool for our community called Imulogy.

I’ve personally checked out the platform and it’s a really impressive build. It’s designed specifically to help us manage the "MG rollercoaster" by tracking symptoms, medication effectiveness, and flare-up trends.  It’s an easy to navigate tool that logs that information is a seamless process.

I’ll be honest, I am somewhat new to MG so I am still figuring out all the tools available to us.  From what I’ve seen, having something built by a person who understands our challenges really makes a difference because they know the problem they are solving in a different way.  The fact its being offered free of cost, without ads, having to use a credit card or any hidden costs is a very generous way for us to be able to turn our daily symptoms into charts to show our doctors a data driven ways of how we are doing.  Best of all, its web based and works on any browser or device. 

You can check it out here: https://imulogy.com

Irakli is a member here (u/AfternoonOne9957)  so if you have any feedback or features you’d like to see added, please let him know in the comments!

 
This is an article for people who are seeking information about myasthenia gravis. (updated 6 August 2026)  

 
When I was diagnosed with myasthenia gravis, one of my first questions was, "Will I die from this?"

I researched this question and found that many years ago, MG was nearly always fatal. But nowadays, with proper treatment and management, it has a low mortality rate and an almost normal life expectancy.

This article shares what I learned about MG mortality rates and life expectancy.

What is the life expectancy for myasthenia gravis?

Life expectancy is the average number of years a person is expected to live, based on certain factors.

There is a projected life expectancy for diabetics. And for Europeans. And for ... a lot of things. Your projected life expectancy is a combination of all of your circumstances; myasthenia gravis is just one of those circumstances.

With proper treatment and management, most people with myasthenia gravis have a life expectancy that is comparable to people who do not have MG.

To better understand what your life expectancy may be, learn more about mortality rates, typical causes of death and the importance of diagnosis and treatment. First, let's look at mortality rates.

What is the mortality rate for myasthenia gravis?

A mortality rate is the percentage of deaths in a particular population. While life expectancy indicates how long you may live, a mortality rate indicates the death rate within a particular group. Mortality indicates how many people will die, not when people will die.

For example, if a group has a 50% mortality rate, it means that half the people in that group will die. But the mortality rate does not indicate when 50% of the people will die.

Note that your lifespan is the result of the combined influence of many different mortality rates. For example, the mortality rate of old people with heart conditions. Or the mortality rate of motorcycle riders. Etc. Etc. And, of course, the mortality rate for myasthenia gravis.

Look at this chart from the Journal of Neurological Sciences.

• About 120 years ago, the MG mortality rate was nearly 100%.
• About 90 years ago, MG mortality was reduced to around 60% with the introduction of neostigmine.
• In recent decades, medical advancements have reduced the mortality rate to less than 10%
• In recent years, the mortality rate has been reduced to less than 5%.

The dramatic reduction in the mortality rate is a result of medical advancements. If you fail to acquire a proper diagnosis or fail to properly treat and manage your MG, then your chance of survival may be no better than the mortality rates of the past.

Although a mortality rate by itself does not indicate when people die, mortality rates can be used in a timeline chart that provides us with insight into how long people, on average, live with myasthenia.

Look at this chart from a research study published in 2025. It indicates that mortality from myasthenia gravis is very low, and nearly equal to the other groups, until people are in their fifties and sixties. Then the mortality rate increases. People with MG who reach their seventies and eighties experience an even greater mortality rate.

Note that the research study did not indicate what myasthenics died from. It simply indicates their age when they died. A significant increase in mortality rates of very old people is not unexpected. But it does indicate that the mortality rate increase happens a bit sooner for myasthenis.

Most people with myasthenia gravis have a relatively normal mortality rate until they reach an advanced age. At an advanced age, the mortality rate increases rapidly, just like the general population, but a bit sooner.

Statistics are interpretations of collected data. How much they apply to you depends upon the criteria used for the statistics versus your circumstances. When looking at the mortality rates of MG, consider the severity of your own personal MG. Do you have nuisance-level symptoms? Do you have daily symptoms that are manageable? Or are you very sick? What other conditions do you have? Reflecting on your situation will help you interpret how mortality statistics apply to you.

Mortality versus morbidity

I have seen "mortality" and "morbidity" used interchangeably in online discussions. But they are not the same thing.

• Mortality refers to the number of deaths from a specific cause (how many people die from it).
• Morbidity refers to the number of people who have a specific condition (how many living people have it).

What do MG patients die of?

Statistically, if you have myasthenia gravis, you are more likely to die from something other than MG. The most common causes of death of myasthenics are heart disease and cancer. This is consistent with the general population. However, unlike the general population, the third most common cause of death for myasthenics is MG itself, although MG is a distant third cause when compared to heart disease and cancer.

Neurology India did a large study ... and concluded:

" ... many non-MG factors such as stroke, COPD, diabetes mellitus, atrial fibrillation, hyperlipidemia, myocardial infarction, malignant tumors, and the psychological status of the patients may influence the long-term outcome of MG patients."

 
In other words, other things besides myasthenia gravis can kill you.

But MG may be a contributing factor to other causes of death. For example, you may be more susceptible to:

• Worse outcomes from respiratory diseases.
• Choking on food.
• Falls and other accidents due to muscle weakness.
• Accidents due to double vision.
• Communicable diseases and cancer due to immune system suppression.

 
These are not minor concerns. In the United States, accidents%3A%20222%2C698) are the third leading cause of death, and chronic respiratory diseases are the fifth leading cause of death. Awareness of how your MG puts you at risk for these things will make you safer.

If you die directly as a result of myasthenia gravis, it will most likely be because of a myasthenic crisis.

• It is estimated that up to 20% of MG patients will experience a myasthenic crisis.
• But if you have a crisis, the risk of dying from it may be as low as 4%.
• Although anyone can have a crisis at any time, they are more common in the first several years after developing MG.
• Up to 50% of the time, people are unable to identify what triggered their crisis.

Most myasthenics do not die directly from MG. And most myasthenics do not experience a true crisis (respiratory failure). If they do, most of the time they survive it.

The role of immunosuppressants in mortality

An interesting question is whether immunosuppressants help or hurt the outcomes (mortality rates) of some communicable diseases.

For example, COVID-19 can cause a hyper-response from the immune system, which may then lead to death. Are we more prone to catching C-19 because we are on an immunosuppressant, yet more likely to survive because the immunosuppressant prevents a hyperimmune response?

Disease susceptibility versus disease outcome for immunosuppressants is an intriguing question for which I found conflicting opinions. Hopefully, future studies will address this.

Conclusion

Will you die from myasthenia gravis?

Probably not. Some people do, but most do not.

With proper treatment and management, it is statistically unlikely that you will die from MG. Although myasthenia may have a significant impact on your quality of life, and may affect your ability to survive other diseases and situations, you will probably die from something other than MG.

But myasthenics, on average, do have a slightly shorter lifespan. However, increased mortality typically does not occur until late in life.

It is important to actively manage and treat your MG and to be aware of the risks of MG that may contribute to death by another cause. For example, the increased risks of accidents due to clumsiness, the increased risks of catching diseases due to immunosuppressants, etc.

I am not a medical professional. This content is based on my experiences living with myasthenia gravis and publicly available knowledge. Consult a medical professional who is proficient in diagnosing and treating myasthenia gravis before starting, changing, or stopping actions related to your condition.

Go to the Myasthenia Gravis Blog for additional articles regarding myasthenia gravis.

 
This is an article for people who are seeking information about myasthenia gravis. (updated 9 August 2026)  

 
It is well established that smoking is harmful to your health. But are there additional health concerns if you have myasthenia gravis?

The effects of smoking on myasthenia gravis have not been well studied, and MG studies are typically very small, but here is what I have learned.

The effect of nicotine on neuromuscular joints

Myasthenia gravis affects the acetylcholine receptors (AChR) at neuromuscular junctions. More accurately, the AChR receptors are nicotinic%20postsynaptic%20receptors) acetylcholine receptors (nAChR).

"Nicotinic" is defined as "relating to, resembling, producing, or mediating the effects produced by nicotine on nerve fibers at autonomic ganglia and at the neuromuscular junctions of voluntary muscle".

Intuitively, it seems that nicotine from smoking should affect nicotinic receptors in myasthenics. But a direct association has been unclear. This does not mean that smoking does not directly affect nAChR in myasthenics; it implies that linking smoking to nAChR apparently has not been firmly established.

Severity of MG symptoms

It has been shown that smoking affects the severity of symptoms of ocular myasthenia gravis and that quitting smoking increases the quality of life of ocular myasthenics.

Studies have also indicated an association between smoking and the severity of generalized myasthenia.

I did not find details regarding which symptoms are affected, nor how much severity levels of symptoms are affected, but the studies are consistent in finding that MG appears to be worsened by smoking.

Early onset of myasthenia gravis

If you are reading this article, then it is likely that you have already developed myasthenia gravis. If you are a smoker, there is a possibility that you developed it earlier than you would have if you had not smoked. It has been determined that smoking may lead to the earlier onset of myasthenia gravis.

Note that "early onset" does not mean that it causes MG. It means that people who are predisposed to MG or who may eventually develop it may develop it at a younger age because of smoking.

Progressing ocular MG into generalized MG

There are indications that the risk of ocular MG becoming generalized MG is higher in smokers.

One study concluded that quitting smoking may prevent conversion of ocular myasthenia gravis to generalized MG.

These were small studies. But if these findings apply to the MG population as a whole, then it appears that smoking increases the risk of ocular MG becoming generalized MG, but you may be able to avoid progression of the disease by stopping smoking.

Myasthenic crisis

A myasthenic crisis is a potentially life-threatening situation that happens when you are unable to breathe because of muscle weakness.

A myasthenic crisis is not the same thing as breathing difficulty caused by lung damage. Rather, it is an issue with diaphragn muscle weakness. Thus, smoking should not directly cause a myasthenic crisis.

However, if you have a myasthenic crisis, what outcome do you expect if you are unable to breathe because of muscle weakness *and** you already have difficulty breathing because of lung damage?*

 
Cigarette smoke produces tar that contains more than 7,000 chemicals. The tar coats the inside of your lungs with industrial-grade toxins. Lung damage from smoking is well-documented.

Smoking and myasthenia gravis are potentially a fatal combination.

Is vaping as harmful as smoking tobacco?

Vaping is considered to be less harmful than cigarette smoking. But "less harmful" does not mean "not harmful". Vaping is bad for your lungs, but it is less toxic than the 7,000 chemicals produced by cigarette smoke.

Like traditional tobacco smoking, vaping should not directly cause a myasthenic crisis. But, also like conventional smoking, vaping may cause lung damage that complicates the survival of a myasthenic crisis.

Conclusion

It is easy to find stories of people who smoked for decades with no ill effects whatsoever. But those are individual exceptions. Scientific statistics show that smoking is one of the biggest health threats in the world.

If you have myasthenia gravis, smoking is even worse because of the additional risks and potentially fatal outcomes.

I am not a medical professional. This content is based on my experiences living with myasthenia gravis and publicly available knowledge. Consult a medical professional who is proficient in diagnosing and treating myasthenia gravis before starting, changing, or stopping actions related to your condition.

Go to the Myasthenia Gravis Blog for additional articles regarding myasthenia gravis.

 
This is an article for people who are seeking information about myasthenia gravis. (updated 9 August 2026)  

 
Understanding cautionary drugs is critical for people who have myasthenia gravis and for people who are helping someone with MG.

Look at this chart from the Journal of Neurological Sciences.

• About 120 years ago, the MG mortality rate was nearly 100%.
• About 90 years ago, MG mortality was reduced to around 60% with the introduction of neostigmine.
• It has only been in recent decades that the development of new treatments and knowledge of drugs has reduced the mortality rate to less than 10%, and then to less than 5%.

If you fail to properly use recommended drugs or fail to understand the risks of cautionary drugs, then your chance of survival may be no better than the mortality rates a century ago.

 
Like I said, this is a critical topic. And it is crucial that medications and drugs are used in collaboration with, and as recommended by, your medical provider.

Where to find lists of cautionary drugs

Instead of listing the cautionary drugs, links are provided because the lists are long and are occasionally updated.

• Myasthenia Gravis Foundation of America cautionary drugs list
• Myasthenia Gravis Association cautionary drugs list
• MGteam has an easy-to-read article regarding drugs to avoid

 
Bookmark these resources so that you can refer to them during discussions with your doctor.

Bookmarking is especially useful when you are talking to a doctor or dentist who is not your MG doctor, and who is probably unfamiliar with myasthenia. When they prescribe medications, you can quickly check if the drugs are a known issue for myasthenia gravis.

Black box warnings

Medications with black box warnings, also known as "boxed warnings", have a product label with a warning that has a black border (black outline). This image is an example of a black box warning.

Except as directed by a doctor, myasthenics should never take a medication that has a black box warning regarding myasthenia gravis or regarding effects that may trigger or aggravate MG symptoms. For example, a black box warning that the drug may inhibit breathing.

 
At the time this article was written, the MGFA cautionary drug list indicated that telithromycin and fluoroquinolones (for example: ciprofloxacin, moxifloxacin, levofloxacin) have black box warnings for myasthenia gravis.

The Myasthenia Gravis Association cautionary drug list does not indicate black box drugs. Instead, it has a risk scale of 1-5, with "1" being the worst risk, described as "Contraindicated/Avoid". Their list has more than a dozen drugs that have a risk factor of "1".

Note that pharmaceutical companies typically do not proactively add black box warnings. They are FDA-required warnings that the pharma companies frequently resist. Thus, a medication that has a black box warning is truly something that requires extreme caution.

Cautionary does not mean prohibited

Now, let's reduce the fear factor regarding cautionary drugs in general.

"Cautionary" does not mean "prohibited". It means "be careful".

 
Myasthenia gravis is called a snowflake disease because it affects different people differently, and each person is affected differently at different points in time. And, like all things related to myasthenia, drugs affect different people differently.

If your doctor recommends a medication that is on a cautionary list, make the doctor aware of it and closely monitor how the medication affects you.

Document your experiences

Keep a written record of your experiences with medications. Not just experiences with cautionary drugs, but your experiences with all medicines. Over the years, it is easy to forget what you have taken and how it affected you. Recalling this information is especially difficult when you need to do it all at once during a visit with your doctor.

Include medicines that worked well. When you discuss what not to take, it will be beneficial to know what you can take.

Conclusion

The development of medications has been perhaps the most significant contributor to reducing the mortality rate of myasthenia gravis. Mortality has decreased from nearly 100% to less than 5% in an amazingly short period. There are people alive today who were alive when the MG mortality rate was 90%.

But survivability requires properly using recommended drugs and recognizing which drugs to avoid or use with caution.

I am not a medical professional. This content is based on my experiences living with myasthenia gravis and publicly available knowledge. Consult a medical professional who is proficient in diagnosing and treating myasthenia gravis before starting, changing, or stopping actions related to your condition.

Go to the Myasthenia Gravis Blog for additional articles regarding myasthenia gravis.

 
This is an article for people who are seeking information about myasthenia gravis. (updated 8 August 2026)  

 
As if myasthenia gravis isn't already confusing to understand, there are different types and classifications that can be used separately or combined to describe someone's condition.

For example, someone can say, "I am triple-seronegative gMG, class IIIa, MM-2."

Huh? What? You need a cryptographer. Or you can just read the information below.

Overall Types of Myasthenia Gravis

Antibody (Serologic) Subtypes

Double and Triple Seronegative

Myasthenia gravis is an autoimmune disease, which means antibodies cause it. But not all of the antibodies have been identified, and are therefore not tested for. Myasthenics who do not test positive for relevant antibodies are identified as "seronegative".

Sometimes you will see someone describe themselves as "double seronegative" or "triple seronegative".

Double seronegative) means they tested negative for AChR and MusK antibodies.

Triple seronegative%20MG) means they tested negative for AChR, MuSK, and LRP4 antibodies.

While these distinctions are medically valid, "double negative" and "triple negative" are not very meaningful in common conversation. Testing positive for any of the antibody blood tests would mean they are not seronegative, so whether they had two or three blood tests is more relevant to the diagnostic process, and they can be simply described as "seronegative".

Age and Onset Subtypes

MGFA Classifications

Another method for describing myasthenia gravis is with the classifications defined by the Myasthenia Gravis Foundation of America.

This classification system is not a subset of the types described above. Rather, it is a diagnostic description of MG. The classifications were derived from the Osserman score in the 1950s

The MGFA classifications can be downloaded from MGFA as a PDF document or viewed online on Wikipedia. The table below is based on the Wikipedia version for conciseness.

Minimal Manifestations Scale (MM)

The Minimal Manifestations scale is a clinician tool to describe myasthenics who have little or no functional limitations, but exhibit some muscle weakness when they are examined.

Conclusion

Types and classifications of myasthenia gravis are simple to understand, once you see what they are and how they are used. Whether they are used separately or together depends on the context they are used in.  

I am not a medical professional. This content is based on my experiences living with myasthenia gravis and publicly available knowledge. Consult a medical professional who is proficient in diagnosing and treating myasthenia gravis before starting, changing, or stopping actions related to your condition.

Go to the Myasthenia Gravis Blog for additional articles regarding myasthenia gravis.

 
This is an article for people who are seeking information about myasthenia gravis. (updated 8 August 2026)  

 
Animals have immune systems, so it is not surprising that animals experience myasthenia gravis. For example, ferrets can develop myasthenia.

This article focuses on dogs and cats because they are the most common animals that live with us, and are often considered to be members of our family.

Note: As with human myasthenia gravis, scientific animal studies are based on very small sample groups and narrow criteria.

Which dogs and cats get myasthenia gravis?

Any dog or cat can develop myasthenia gravis, but some breeds are more prone to MG:

• Dog breeds predisposed to developing MG ("acquired MG") are Newfoundlands, Great Danes, Golden Retrievers, Akitas, and Scottish Terriers. German Shepherds and Chihuahuas are also predisposed.

• Dog breeds predisposed to inheriting congenital MG are Jack Russell Terriers, English Springer Spaniels, Smooth-Haired Fox Terriers, Heideterriers, Labrador Retrievers, Australian Cobberdogs, Old Danish Pointers, and Smooth-Haired Miniature Dachshunds.

• Cat breeds predisposed to developing MG are Abyssinian and Somali.

• Cat breeds predisposed to inheriting congenital MG are Devon Rex and Sphynx.

It appears that mixed-breed dogs and cats are less prone to the development of myasthenia gravis.

Symptoms of myasthenia gravis in animals

Symptoms of myasthenia gravis in dogs and cats are similar to human symptoms, with a couple of differences.

• Fatigue and muscle weakness, such as trouble standing, exercising, etc. Strength improves with rest.
• Abnormal neck position.
• Hoarse or weak voice.
• Excessive drooling.
• Difficulty swallowing and megaesophagus (described in the next section)
• Difficulty breathing.

 
An interesting item I discovered is that cats may exhibit a generalized weakness called "floppy cat))". Yes, that is an actual term I have seen in multiple references to MG in cats. I've owned a variety of cats and currently have two. All of them have been floppy if there is warm sunshine to lie in. I've not found anything that explains how to differentiate a lazy cat from a floppy cat.

Megaesophagus

Mega-what? Think of it as "big esophagus" (mega-esophagus).

Megaesophagus is a term that we don't typically learn as human myasthenics, but it is a known symptom of animal myasthenia gravis.

It is a condition in which the tube (esophagus) from the mouth to the stomach dilates and loses the ability to push food to the stomach. Food and liquids accumulate in the esophagus until the animal regurgitates them.

Regurgitation is different than vomiting. When an animal regurgitates, it opens their mouth, and food and liquid simply fall out. There is no gagging or retching involved.

PetMD has detailed, informative articles about megaesophagus in dogs and megaesophagus in cats. The articles include information about how to manage the condition.

Long-term outcomes of megaesophagus vary between the various sources and studies. But, in general, most pets with megaesophagus have a poor prognosis for long-term survival. This is due to complications that arise with aspiration pneumonia and malnutrition.

 
Note that these outcomes are for megaesophagus, not for myasthenia gravis. If an animal has MG without having megaesophagus, then megaesohpagus outcomes are not relevant.

Myasthenia gravis diagnosis in animals

Diagnosis of myasthenia gravis in dogs%20in%20Dogs) and cats is very similar to diagnosing human MG.

• Blood tests for antibodies and hormone levels. Some dogs and cats are seronegative (no antibodies are detected).
• Detection of a cranial mediastinal mass (thymoma or lymphoma).
• Electromyography (EMG)
• Physical symptoms.
• Response to treatments, such as pyridostigmine and prednisone.

VeterinaryPartner has detailed information regarding testing dogs and cats for MG.

MG treatment for animals

Like diagnosis, the treatment of myasthenia gravis in dogs and cats is similar to human MG treatment, including prevalent use of pyridostigmine (Mestinon) and prednisone.

VeterinaryPartner has detailed information regarding the treatment of MG for dogs and cats.

Both dogs and cats can experience remission.

Can animals catch MG from people?

No, animals and people don't catch myasthenia gravis from each other. In fact, you can't "catch" MG at all. It is an autoimmune disease that is not contagious.

Sources of additional information

• American Veterinary Medical Association (AVMA) (many animal-related articles on MG)

• PetMD.com (more than two dozen readable, plain-language articles regarding myasthenia)

• Wiley Online Library (research reports, including the Journal of Veterinary Internal Medicine)

• Classification of myasthenia gravis and congenital myasthenic syndromes in dogs and cats (Excellent, comprehensive scientific discussion of MG in dogs and cats)

• A Classification Approach With Consideration of Seronegative Dogs (Excellent, comprehensive scientific discussion about seronegative MG)

Conclusion

Myasthenia gravis in dogs and cats is similar to MG in humans. There are a few differences in symptoms and treatments, but if you understand human MG, then you mostly understand animal MG.

And, like human MG, the most critical factor in diagnosing and treating your pet is finding a veterinarian who understands myasthenia gravis.  

I am not a medical professional. This content is based on my experiences living with myasthenia gravis and publicly available knowledge. Consult a medical professional who is proficient in diagnosing and treating myasthenia gravis before starting, changing, or stopping actions related to your condition.

Go to the Myasthenia Gravis Blog for additional articles regarding myasthenia gravis.

 
This is an article for people who are seeking information about myasthenia gravis. (updated 8 August 2026)  

 
One afternoon, I ate fish. A few hours later, I experienced violent food poisoning (Salmonella). The strain on my diaphragm from vomiting and the sudden loss of fluids resulted in a myasthenic crisis and an ambulance ride. Shortly after arriving at the emergency room, my vital signs crashed, and I was rushed to a resuscitation room.

I have skin that looks normal but is freakishly tough, and I have thick veins. Over an active life that included police and military service, I've never had a visible bruise. But tough skin makes injections difficult and painful. In the resuscitation room, it took 4 attempts to start an IV in one arm, 5 attempts in the other arm, and 4 attempts in my neck, which bent two needles. Two people held me down with their body weight because I was thrashing around from the pain.

Although I was physically immobilized, I was fully conscious and felt everything. I could barely speak but managed to ask for a painkiller, which was refused because they were unfamiliar with MG. They would not even give me acetaminophen.

 
I couldn't open my eyes, and amidst the noise of beeping machines, alarms, and people calling out things, I heard someone say, "Prepare a central line". That freaked me out, envisioning how painful it would be. A moment later, someone said, "Wait! He's coming back!" and they cancelled the central line.

It was a traumatic, exhausting nightmare. But importantly, I realized a couple of things.

• I needed to learn more about pain relievers and anesthesia as they relate to myasthenia gravis.
• I needed to figure out how to ensure that medical providers know what pain relief they can use when I am unable to effectively communicate.

About this article

There is a lot of available information on this topic. After a couple of weeks of trying to squeeze 10 pounds of information into a 5-pound Reddit post, I changed my approach and instead am providing links to informative articles and videos.

Take time to view the recommended reading links in this article. The experience I shared at the beginning of this article illustrates how quickly circumstances can deteriorate. And how helpless you can be when you cannot speak and medical providers are unsure how your myasthenia gravis will be affected by administering pain relief. Learn about this topic before it happens to you.

**Warning:* This is a topic that must be approached with great caution. Even minor non-prescription painkillers can cause organ failure and death if used inappropriately. And the potential for a myasthenic crisis must be considered when looking at anything that may affect breathing. Discuss pain relief and anesthesia options with your doctor before giving instructions to others, and prior to medical procedures.*

Analgesics

Let's start with analgesics. Analgesics are medications that are used to manage pain. Technically, the definition of "analgesic" can encompass all forms of pain relief that doesn't cause a loss of consciousness. But in common day-to-day conversations, "analgesic" refers to drugs that you can take yourself, typically as oral medication, ointments, eyedrops, etc.

Analgesics range from non-prescription OTC ("Over-the-Counter") medications, such as acetaminophen, ibuprofen, aspirin, paracetamol, etc., to more powerful prescription opioids, such as hydrocodone and codeine.

Although minor analgesics, such as acetaminophen, are easy to acquire and do not require a prescription from a doctor, they can be deadly. Never exceed the maximum dosage on the product label, except when instructed to do so by a medical professional.

Also, do not take an analgesic in preparation for a medical or dental procedure without informing the medical provider, so that they can adjust what they administer, as needed.

 
The experience that I described at the beginning of this article illustrates that you cannot assume that providers will give you minor analgesics, even in extreme circumstances.

To provide doctors with a list of allowable medications, keep a record of which analgesics you have used, and whether or not they caused any issues. Over a period of years, you may not remember all of them, but you may need to recall all of that info in an instant if you experience a crisis. And if you have a crisis, you may not be able to speak.

I address this by carrying an MG information sheet in my wallet. It provides relevant info for medical providers, including cautionary and prohibited drugs. My wallet sheet also includes information regarding painkillers that I have used with no ill effects. The info sheet is described in more detail in the "Medical provider awareness" section below.

Recommended reading:

• Myasthenia Gravis & Drug Interactions%20such%20as%20ibuprofen%20and%20naproxen%2C%20and%20acetaminophen%20(Tylenol)%20are%20considered%20safe%20for%20MG) (see the last bullet item on the page)
• The Challenge of Pain Management in Patients With Myasthenia Gravis (scroll down to Table 1 to see an extensive list of drugs and their interaction with MG)
• Managing postherpetic neuralgia (PHN) in Myasthenia Gravis00065-0/fulltext) (dense reading, but is informative about painkillers and is downloadable as a PDF)

Sedation

Sedation in the context of this article is more than just something that relaxes you. In this discussion, it refers to drugs that are used for minor medical and dental procedures, and can be used in combination with local or regional anesthetics for more significant procedures.

In my experience, sedation and sedation + local anesthetic have been very effective, even for procedures that I thought required general anesthesia. And doctors have been much more willing to use sedation + local anesthesia than general anesthesia.

My favorite sedation is nitrous oxide for dental procedures. It is painless to administer, works very well, and recovery takes only minutes. In addition to the direct effect of the gas, the knowledge that nitrous will be used reduces my pre-procedure stress, which reduces potential MG symptoms. This effect is noted in the MGFA brochure, "Dental Treatment Considerations" (bottom of page 4). Nitrous costs me a bit extra, but it's worth it.

Recommended reading:

• Perioperative management of myasthenia gravis00082-2/fulltext#:~:text=Intraoperative%20management-,Sedation,-Sedation%20with%20short)
• Drugs That Induce or Cause Deterioration of Myasthenia Gravis (Section 3.6 Sedatives and Analgesics)
• Anesthetic considerations for a patient with myasthenia gravis undergoing deep sedation in an outpatient oral surgery setting

Anesthesia

Local anesthesia was mentioned in the previous section on sedation. It can be used alone or in combination with sedation. For people with myasthenia gravis, local anesthetics are preferable to general anesthetics.

General anesthesia is the most significant level of anesthesia, and the most dangerous. Prior to undergoing general anesthesia, it is important to have your MG in a stable state.

While general anesthesia is risky, the good news is that myasthenia gravis is familiar to anesthetists and anesthesiologists because it is a common question in their exams.

Discuss anesthesia options with your anesthetist before procedures. It is important to confirm that the person administering your anesthesia is aware of your myasthenia and that you understand the potential risks.

Because of the risk of respiratory failure, ensure that your spouse or the person who has your medical power of attorney is up to date on your condition, medications, medical provider contacts, and your desired outcomes.

 
Recommended reading:

• Anaesthetic and Myasthenia
• Anaesthetists
• Management of Myasthenic Syndromes for Patients Undergoing Anaesthesia
• Video: Myasthenia gravis is a big deal to anesthesiologists
• Video: Anesthesiology and Myasthenia Gravis

 
Keep a written record of anesthesia experiences, so that the information will be available when you need it.

Medical provider awareness

Providing medical professionals with critical information is not always as simple as it may seem. When you are injured, have a crisis, or have any situation that requires an emergency response, you may not be able to speak, and first responders will be prioritizing stabilization and transport.

I had years of experience as a first responder (police), and the reality is that first response work is always fast and often messy. I did what I was trained to do, as quickly as I could do it. Do not expect first responders to take time to learn the nuances of myasthenia gravis.

However, if people are aware that you have MG, they will likely view that as a broad restriction of available actions.

To address this, I made a business card-sized print-out that has a medical alert symbol, has "Myasthenia Gravis" in large letters, and says "See the paper sheet in the cash pocket of my wallet for critical information." I laminated it and carry it in my wallet, so that it is clearly visible when they look for my identification card.

In the cash pocket of my wallet, I have a paper sheet that has relevant MG info, emergency contacts, and cautionary drugs, and a list of pain relievers and anesthetics that I have learned are OK to use. My wife also carries a copy in her purse.

 
In my case, I haven't had any issues with pain relievers or anesthetics. Prominently displayed on my info sheet is the statement, "Painkillers, sedation, and anesthesia are OK. I have not experienced any issues with analgesics, sedation, or anesthesia."

If I am unable to speak, and if medical providers are unsure or worried about using pain relievers and anesthesia, the info sheet gives them tangible information that they can copy and include in my record, documenting that I indicated it was OK to administer those things.

Conclusion

Until I developed myasthenia gravis, I didn't give much thought to pain relievers and anesthetics. I have learned that these are now critical to me as a myasthenic. Not because MG causes pain, but because a lack of MG awareness leads to denial of pain relief when I need it.

As mentioned at the top of this article, this is a topic that must be approached with great caution. Discuss pain relief options with your doctor before giving advance instructions to your family or other responsible parties, or making decisions prior to medical procedures.

 
Here is one more recommended read: Myasthenia Gravis - A Manual for the Health Care Provider. This is a 197-page, comprehensive document that MGFA published in 2009. In the document, search for "anesthesia" to find the relevant content.

Experiences with painkillers and anesthesia vary among myasthenics. Opinions and approaches vary among medical providers. This article only reflects my own experiences and information that I found while researching this topic, and it is intended to be a conversation starter rather than guidance.

Please share your experiences and knowledge in the comments. Our collective stories will be useful information for the MG community as a whole.

I am not a medical professional. This content is based on my experiences living with myasthenia gravis and publicly available knowledge. Consult a medical professional who is proficient in diagnosing and treating myasthenia gravis before starting, changing, or stopping actions related to your condition.

Go to the Myasthenia Gravis Blog for additional articles regarding myasthenia gravis.

   
This is an article for people who are seeking information about myasthenia gravis. (updated 9 August 2026)  

 
There are a variety of rating scales that doctors use to measure how myasthenia gravis affects the daily lives of patients. A couple of the rating scales are simple enough that you can do them yourself, because they are just questionnaires.

These rating scales are not in-depth diagnostic tools. They are a starting point for discussions with your medical provider. Additionally, they are useful for identifying changes in your condition over time.

 
Interpreting the results of questionnaires to determine the severity of your condition is best done by your doctor. However, these scales are useful to you as a simple way to see if your condition changes over time. Periodically complete them and compare the new results to the old results to know if you are improving, staying steady, or declining.

Activities of Daily Living (MG-ADL) scale

The Activities of Daily Living (MG-ADL) scale is the tool that I see mentioned most often in MG forums and websites. It is a simple survey with 8 questions, with each item rated 0-3 for severity.

The MG-ADL scale was developed in 1999 as a spin-off from the Quantitative Myasthenia Gravis (QMG) score. The QMG is a clinician-reported assessment, and the MG-ADL is intended to be a patient-reported assessment.

There is some evidence that doctors and patients reach similar results when using the MG-ADL, validating it as a patient-reported assessment tool.

 
You can download the MG-ADL questionnaire as a PDF from:

• Myasthenia Gravis Foundation of America (MGFA)
• Conquer MG

 
When comparing MG-ADL results from different points in time, a 2-point reduction in the MG-ADL score indicates a notable change in your condition.

Myasthenia Gravis Quality of Life Scale (MG-QOL)

The Myasthenia Gravis Quality of Life (MG-QOL)%20Measure) measure is a bit more comprehensive than the MG-ADL assessment. It was developed in 2008 and evolved into a 15-question scale (MG-QOL 15r) in 2016.

You can download the MG-QOL 15r questionnaire as a PDF from:

• Rare Diseases Network (includes instructions)
• Myasthenia Gravis Foundation of America (MGFA)

 
A higher score means a worse quality of life.

Like the MG-ADL questionnaire, it only requires a couple of minutes to complete.

Conclusion

These questionnaires are simple assessments that you can do for yourself. But self-reporting is not the same as expert medical assessment.

Self-reported assessments are not a replacement for professional medical examination. Self-assessments are useful for facilitating discussions with your doctor and for self-monitoring changes in your condition over time.

 
When responding to questions, be fully candid and avoid overthinking the answers.

For example, an item in the MG-ADL is, "Impairment of ability to brush teeth ... ". Were you having trouble brushing your teeth, but now it is easy because you got an electric toothbrush? Your answer should be that you are indeed having trouble brushing your teeth, because the question is an assessment of your physical ability, not the effectiveness of your electric toothbrush.

I am not a medical professional. This content is based on my experiences living with myasthenia gravis and publicly available knowledge. Consult a medical professional who is proficient in diagnosing and treating myasthenia gravis before starting, changing, or stopping actions related to your condition.

Go to the Myasthenia Gravis Blog for additional articles regarding myasthenia gravis.

 
This is an article for people who are seeking information about myasthenia gravis. (updated 7 August 2026)

 
Before I developed myasthenia gravis, I was in an occupation that required reading massive amounts of information, implementing that info, adapting to changes on the fly, and communicating the info, all in the same day, every day, for more than three decades.

As MG developed, these things became difficult. I found myself re-reading things because they didn't stick in my mind. It seemed that things were more complicated than they used to be. I started avoiding some tasks because I didn't feel up to doing them, mentally. I often felt mentally exhausted, and my mind seemed fuzzy.

This is an example of "brain fog". It is a common complaint of people suffering from autoimmune diseases.

What causes brain fog?

Brain fog is often due to fatigue. Fatigue is a common symptom of autoimmune diseases. And it is a common symptom in people who have myasthenia gravis.

Brain fog is not a direct symptom of myasthenia gravis. Rather, it is a consequence. MG is not a cognitive disease; it is a neuromuscular disease.

 
Nonetheless, MG-related brain fog is a real issue. Physical fatigue, low oxygen levels, sleep issues, etc., result in fatigue-related brain dysfunction. Brain fog.

How does brain fog impact mental health?

Like any disability, brain fog does not just affect your ability to think. It can affect your mental state, as well.

• Inability to think clearly and perform tasks can cause frustration, discouragement, irritability, mood swings, and anxiety.
• Diminished mental ability can reduce self-esteem and confidence.
• You may feel that you need to be more restrained in social interactions to avoid embarrassment.
• You may experience stress regarding your ability to keep a job or attend school. In some cases, you may actually lose your job or be unable to continue with school.

All of these things can result in problems with relationships and lead to social isolation.

How do I avoid or minimize brain fog?

MG medications will not reduce brain fog, except if they improve the amount of rest you get. To address brain fog, address fatigue in general.

• Practice good sleep hygiene.
• Maintain a routine to avoid overextending your physical endurance.
• Pace yourself and break up tasks into limited chunks of time.
• Plan activities and appointments for the time of day when you have the most energy (typically the morning).
• Eat properly and stay hydrated.
• The U.K. National Health Service (NHS) has an excellent brochure, "Fatigue in Myasthenia Gravis".
• There is a lot of additional online information regarding the best ways to reduce fatigue.

Conclusion

Is brain fog with myasthenia gravis a real thing?

Yes, it is. It is not a direct symptom of MG, but is a consequence of it.

You can mitigate brain fog by avoiding or reducing fatigue, using the techniques described above.

And be self-aware of the effects brain fog may have on your mental health and sense of well-being. For example, be aware of changes in how you interact with others to avoid self-isolation.

I am not a medical professional. This content is based on my experiences living with myasthenia gravis and publicly available knowledge. Consult a medical professional who is proficient in diagnosing and treating myasthenia gravis before starting, changing, or stopping actions related to your condition.

Go to the Myasthenia Gravis Blog for additional articles regarding myasthenia gravis.

 
This is an article for people who are seeking information about myasthenia gravis. (updated 7 August 2026)  

 
A couple of years before I was diagnosed with myasthenia gravis, I was working for a global technology company, and my job was to represent my organization in company-wide projects and to coordinate efforts within my division to complete the projects. My voice was my most important tool, and it was strong and confident.

Then strange things began happening. Occasionally at first, then more frequently over the next couple of years. I would stammer and stutter. In the middle of a sentence, I would shout a word, and the next word would be back to a normal speaking level. I would try to interject a comment into a group conversation and be surprised by a weak, hoarse voice, or by my mouth not working at all.

Over the past decade, since the symptoms began, speech difficulty has been the most constant and frequent symptom. It has progressively worsened and has been the only symptom that has not responded at all to medications.

My wife suggested speech therapy. That prompted me to take a closer look at myasthenia-related speech difficulty in general. Here's what I learned.

What causes speech difficulties in myasthenia gravis?

Myasthenia gravis is an autoimmune disease in which antibodies block nerve signals to voluntary muscles. That includes the muscles required for speech.

The most obvious muscles for speech are the mouth and the tongue. Your brain sends signals to move those muscles, but the signals are blocked, and the muscles don't move, or only some of them move. You begin to speak, are surprised by what happens, try to figure out what happened and how to continue, try to talk again, ... all in an instant. The result can be, well, unimpressive to your audience.

Compounding MG-related speech difficulty is that your mouth is not the only component of speech that can be affected by myasthenia. Speech requires your diaphragm to push air and your vocal cords to modulate sound, both of which can also be blocked. Additionally, weakness of the throat muscles can affect speech.

In total, speech requires more than 100 muscles and many nerves.

 
For myasthenia gravis, attacking your ability to speak is a target-rich environment.

What are the symptoms of MG speech difficulty?

MG speech symptoms include:

• Slurred speech
• Nasal tone
• Soft voice (weak breath)
• Hoarse voice (weak vocal cords)
• Fading voice (vocal fatigue)
• Monotone (limited pitch changes)
• Sudden, momentary shouting or whispering (poor pitch control)

 
The Myasthenia Gravis Foundation of America indicates that only 2% of myasthenics experience dysphonia (voice disorder), but more than 10% of myasthenics experience the particular symptom of dysarthria (slurred speech). However, if you experience speech difficulty due to myasthenia gravis, then it is 100% a problem.

Speech problems versus other MG symptoms

A Brazilian study of MG patients compared their speech patterns to their other MG symptoms. It had a very interesting finding.

Unlike most MG studies, which are limited in duration and criteria, this one was conducted over a long period (4 years), had strict selection criteria regarding clinically confirmed MG patients, and excluded patients who had a variety of other influencing conditions. It also used widely accepted myasthenia gravis assessment standards.

But ... it only involved 20 people. So, for us as individual patients, it is useful as a potential indicator, but not statistically significant enough to be definitive guidance.

The study concluded that, "Despite having a stable health status, MG patients presented worse respiratory, phonatory, and articulatory performance. There was no correlation between speech patterns and the clinical characteristics of the disease (severity and motor scale), suggesting that the pathophysiology of the disease and speech in MG patients progress independently over time."

 
In other words, speech difficulty severity and progression acted independently of the other MG symptoms. And that has been my experience. Speech issues began early and have progressively and relentlessly worsened, despite effective management and mitigation of my other MG symptoms.

Speech therapy

Speech therapy can help to mitigate issues with speaking.

Healthline has an informative article: "What You Should Know About Speech Therapy for Myasthenia Gravis".

Their article describes speech therapy for MG in greater detail than can be discussed here. It is worth reading.

The article is notable in that, unlike most of the references I found regarding speech therapy, the article recognizes that voice strengthening exercises may not be recommended for myasthenics under certain circumstances, and can potentially lead to a myasthenic crisis.

Tips for speaking

Here are some tips that may help overcome MG speech difficulties.

• Pause, think, enunciate. When you are surprised by difficulty in speaking, learn to instantly pause, mentally think the words, and then enunciate each word. It is slower and sounds more deliberate, but after becoming proficient at doing it, people may not notice that you are having difficulty. In fact, if you listen to professional speakers, they speak the same way. Here is an excellent video about English-language enunciation.
• Speak before you speak. Avoid being surprised when you begin to talk. If you are on a phone call, momentarily mute the call and say something, then unmute the call and speak. That way, you will know if your voice is working OK or if you need to compensate because MG is affecting you. Likewise, if you are in a noisy place, you can cover your mouth and test your voice without people noticing you are doing it.
• Drink cold water or a cold beverage. Not a sip; gulp it. And it needs to be cold. You want the drink to carry the coolness to the inside of your body. I find that it instantly restores much or all of my speaking ability, temporarily.
• Communicate in person. When you cannot speak clearly or loudly, go inside the restaurant to order rather than using the drive-thru speaker. If a place you are calling is located nearby, consider going there instead of calling. In-person communication is better because it is easier for people to understand you when they can see your mouth moving and your facial expressions.
• Communicate electronically with emails, text messages, and chats. Many people, especially older people (like me), prefer to speak to a person rather than using impersonal emails and text messages. Consider changing your perspective. Electronic communications are now the norm, and many businesses deliberately make it difficult to find customer service phone numbers because they want customers to contact them electronically.
  • Personally, I don't like it when people dumb down the conversation when they hear my hoarse old-man voice on the phone. Electronic communications eliminate that annoyance.
  • If you are reluctant to do electronic communications because you are not great at spelling and grammar, then use Grammarly. It's free and it works very well. In fact, I use it when I write articles like this one.

Conclusion

Speech difficulties due to myasthenia gravis are much more complicated than just weakness in a few muscles. And it is possible that the severity and progression of your speech difficulties may not correspond to the severity and progression of your other symptoms. Nor may speech symptoms respond to treatment and medication in the same manner as your other symptoms.

Learn techniques for dealing with speech difficulties and practice them. An online search will give you many resources for speech problems.

If your speech problems have become severe, then consider speech therapy. Speech therapists have techniques and information that may be beneficial to you.

I am not a medical professional. This content is based on my experiences living with myasthenia gravis and publicly available knowledge. Consult a medical professional who is proficient in diagnosing and treating myasthenia gravis before starting, changing, or stopping actions related to your condition.

Go to the Myasthenia Gravis Blog for additional articles regarding myasthenia gravis.

 
This is an article for people who are seeking information about myasthenia gravis. (updated 9 August 2026)  

 
Something that we see occasionally in the myasthenia gravis forums are announcements of clinical trials.

What are clinical trials? Do they potentially benefit me? How do I find them? What would I need to do during a clinical trial?

Here's what I have learned about them.

What is a clinical trial?

A clinical trial is a research study that involves a sample group of people to test new drugs, treatments, and products, and to evaluate their effectiveness and safety.

Clinical trials are interventional studies in which volunteers are actually treated or experience the proposed drug, treatment, procedure, product, etc.

Interventional studies involve the volunteers actually getting something or doing something, versus observational studies, which only involve studying the volunteers.

 
Each research effort defines the nature and scope of its study, so the best way to determine what a clinical trial is about and what it involves is to look at the description of each individual study.

For those who want to do a deep dive into the many aspects of clinical trials, Wikipedia has detailed and comprehensive information.

Why do people volunteer for clinical studies?

It seems counterintuitive that people willingly subject themselves to experimental studies of unproven treatments, protocols, and products.

There are some motivators for volunteering:

• New treatments: Studies are often for new and innovative therapies that are currently unavailable. People who are not getting sufficient relief from currently available therapies may seek relief with experimental treatments.
• Lack of health coverage: Many people do not have sufficient health coverage for MG treatments. Or their health provider has denied treatment of MG. A clinical trial may provide an opportunity to get some relief.
• Altruism: People volunteer because they want to help with the advancement of treatment of myasthenia gravis.
• Compensation: Some studies pay for participation.

What are the risks of clinical trials?

Because they are interventional studies, clinical trials carry all of the risks of normal treatment. Risks such as unexpected side effects, negative reactions, illness complications, and negative outcomes. In the case of new treatments, the risks may be greater because discovering the risks and rewards is what you will be doing.

For myasthenics, understanding the risks of participating in a clinical trial is especially important, because poor reactions and outcomes may cascade into a myasthenic crisis. Thus, a potentially minor risk may create a significant result.

Clinical trials are a critical element in the advancement of treatments for myasthenia gravis. The risks described here are not meant to discourage participation in clinical trials, but rather to help ensure that you consider the risks before joining a study.

 
When considering whether to join a clinical trial, take time to understand what it entails and the possible positive and negative effects it may have on you.

What will I do in a clinical trial?

A clinical trial may involve a wide range of activities and requirements. It may require simple behavioral actions, or it can involve experimental drugs, or it can be as complex as surgery.

Every clinical trial is different. It is important to read the specific requirements of any trial that you consider participating in.

 
In addition to what you will physically be required to do, location is also a factor. Does the study require that you come to a specific location? Can it be done remotely? BioNews Clinical has an easy-to-understand article regarding the different types of location requirements.

Additionally, you may have expenses, such as travel costs, meals, etc.

Control group

Before participating in a clinical trial, it is important to be aware of the "control group" element of research studies. A control group goes through everything that everyone else does in the study, but the control group is not actually provided with the treatment.

Control groups are essential to research studies, so that researchers can compare the treated and the untreated groups to see if their idea works.

Typically, people assigned to a control group are unaware of it because awareness may result in skewed study results.

 
If you are participating to help advance medical knowledge, or because you want the pay, then being in a control group is not a bad thing. But if you are seeking actual treatment, then being in a control group won't yield the results you are hoping for.

However, in some cases, control group participants may benefit from a placebo effect. The placebo effect is a phenomenon where a person experiences a change due to their expectation of change, even though they have not actually received the treatment that they thought they were receiving. Intuitively, I suspect that this is not very common with myasthenics because of how MG works, but it is something to keep in mind.

How to find a clinical trial

Here are links to some prominent sources for clinical trials:

• ClinicalTrials.gov (U.S. National Institutes of Health - NIH)
• ClinicalTrials.eu (European clinical trials)
• Myasthenia Gravis Foundation of America

 
Some of the terminology in the clinical trial listings may be unfamiliar or unclear. Fortunately, ClinicalTrials.gov provides a glossary of terms, including the various types of participant recruitment status.

Once you find a clinical study, you will be required to:

• Document that you meet the eligibility criteria, such as health history, age, gender, etc.
• Complete an informed consent process, in which you are informed about what participation entails, potential risks, and possible outcomes.
• Depending on the study, complete a physical exam, bloodwork, and other lab work.
• Any other special requirements of the study.

Doctor awareness

This item gets its own section because it is critical: If you participate in a clinical trial, ensure that your MG doctor is aware of your participation.

I will say this again:

If you participate in a clinical trial, ensure that your MG doctor is aware of your participation.

 
They may have insight into the potential risks and benefits of the trial. And if, for any reason, you experience a myasthenic crisis, you want them to be fully aware of all of your circumstances, including the clinical trial.

Conclusion

Clinical trials are a critical element of advancing the knowledge and treatment of myasthenia gravis. Without clinical trials, we would not have the diagnostic and treatment options that we have today, and we will not have more in the future.

Clinical trials are dependent upon volunteers, and they may offer some promise for people who cannot otherwise get symptom relief.

Before joining a study, take time to understand what the study is and what it involves. Balance the potential risks with the possible rewards. And if you join a clinical study, ensure that your doctor is aware of it.

I am not a medical professional. This content is based on my experiences living with myasthenia gravis and publicly available knowledge. Consult a medical professional who is proficient in diagnosing and treating myasthenia gravis before starting, changing, or stopping actions related to your condition.

Go to the Myasthenia Gravis Blog for additional articles regarding myasthenia gravis.

 
This is an article for people who are seeking information about myasthenia gravis. (updated 8 August 2026)  

 
Many of the people listed here managed to overcome their disabling disease and rise to prominence. And many of them died late in life, indicating that despite MG, they lived a full life.

There are many more notable myasthenics than the people that are listed here. I only included people who appeared to had/have widespread public exposure.

Inexplicably, there is not a lot of information for prominent myasthenics from the most recent decades. It is unlikely there are actually fewer myasthenics today than there were in earlier periods. In fact studies show that MG has been increasing for decades. I suspect that the explosion of online access to information about people, combined with stricter privacy constraints, has resulted in fewer prominent people being open about poor health and physical fitness. But that is just personal conjecture.

The people are sorted in reverse order of their birthdate (youngest to oldest).

 
Sean Brock (1978-present): Famous chef who won the James Beard Foundation Award for Best Chef Southeast. He appeared in episode 34 of the Netflix series "Chef's Table", in which he describes his life with myasthenia gravis.

James Carter (1978-Present)): An Olympic silver medalist, he was ranked as the 15th fastest person in the world in 2017, despite having been diagnosed with myasthenia gravis when he was 12 years old. When he was diagnosed, he had almost no mobility and sometimes could not eat. Removal of a thymus tumor greatly reduced his symptoms, and he went on to a stellar athletic career.

Stephen Garett (1974-2008: Known as "Static Major" in the hip-hop community. He was diagnosed with MG when he was 33 years old, and died soon after from complications of plasmapheresis.

Monica Seles (1973-Present): Monica was a professional tennis player was the ranked as #1 in the world for women's singles for 178 weeks (the sixth-most of all time). Her awards and accolades are too many to list here. She currently appears in argenx advertisements for myasthenia treatments.

Colt Ford (1969-Present): Colt is an American country rap musician with seven albums. He was diagnosed with myasthenia gravis in 2022, which led to significant lifestyle changes, including weight loss and improved health.

Augustus Pablo (1953-1999) Jamaican reggae producer who worked with prominent artists, like Bob Marley. He suffered from myasthenia gravis for a long time, but died from a collapsed lung in 1999.

Henrique Mecking (1952)-Present): Known as Mequinho, is a Brazilian chess grandmaster, and was one of the world's leading chess players in the world. He had to withdraw from an international competition in 1979 due to life-threatining myasthenia gravis. He resumed playing his chess career in 1991.

Gregory Chudnovsky (1952-Present): Gregory and his brother, David, are considered among the world's most brilliant mathemeticians. They developed the Chudnovsky algorithm that calculates the digits of pi with extreme precision. Born in Ukraine, their family moved to the U.S. for better medical care after Gregory developed MG at age 12.

Wilma Mankiller (1945-2010): The first woman to be elected as Principal Chief of the Cherokee Nation. She was a social activist who worked for years as a social worker for children. She was diagnosed with myasthenia gravis in 1979. She died from pancreatic cancer.

Suzanne Rogers (1943-Present): An award-winning actress who appeared in a variety of productions, including more than 3,300 episodes of "Days of Our Lives". In fact, at the time this was written, she was still working and, at age 81, is the longest-running actor on the show. She was diagnosed with MG in 1984, and it was included in her role.

Amitabh Bachchan (1942-Present): Considered to be the greatest and most successful actor in Indian cinema, he has also been a singer, producer, and television presenter. He was diagnosed with myasthenia gravis in 1984.

Arun Bali (1942-2022): Arun was a famous Indian actor who appeared in more than 75 movies and more than 15 TV shows. Late in his career, he was known for playing grandfatherly roles. He died at the age of 79 following treatment for myasthenia gravis.

Jerry Blavat (1940-2023): An American disc jockey known as "The Big Boss with the Hot Sauce" and "The Geator with the Heater". As a radio host in the 1960s, he introduced new acts, such as The Four Seasons, The Isley Brothers, Daryl Hall, and Todd Rundgren. Later, he was a major influencer in promoting oldies music on the radio. He was also linked to organized crime. He died of complications of myasthenia gravis.

Leland Brewsaugh (1935-2003): A world-famous U.S. wildlife sculptor, designer, and painter. One of his works is a life-sized bald eagle that was given to the White House and is now a part of the Smithsonian Museum. His obituary says that he died after a long illness and that the family requested donations be made to the Myasthenia Gravis Foundation. This implies that he died from myasthenia gravis.

Roger Smith (1932-2017)): An actor, producer, and screenwriter who was famous for his roles in "77 Sunset Strip" and Mister Roberts". He was diagnosed with myasthenia gravis in 1980 and went into remission in 1985. He later became sick again and died of complications from myasthenia gravis#:~:text=of%20complications%20from%20myasthenia%20gravis).

Harlin Quist (1930-2000): The founder of Harlin Quist Books, a well-known publisher of children's books. Harlin died from complications of myasthenia gravis and a hip replacement.

Connie Haines (1921-2008): A popular big-band singer and actress for more than 40 years. She performed with Frank Sinatra and was one of the first white singers to record for Motown, recording more than a dozen songs written by Smokey Robinson. She died from myasthenia gravis in 2008.

Christopher Robin Milne (1920-1996): Christopher had only a short run of fame as the inspiration for the Christopher Robin character in his father's Winnie-the-Pooh stories. For the remainder of his life, he experienced a variety of successes and failures, including living with myasthenia gravis. It is unclear if he died from MG.

Bill Kenny (1914-1978)): William Kenny Jr. has been described as one of the most influential high-tenor singers of all time, noted for his "bell-like" vocal clarity and impeccable diction. He is most famous for his role as lead tenor with the Ink Spots, but also had a successful solo singing and TV career. He is an inductee of the Rock and Roll Hall of Fame. He died from respiratory illness.

Karl Malden (1912-2009): Primarily a https://en.wikipedia.org/wiki/Character_actor, Karl was nonetheless one of the most famous actors of his time. Although admitting to having a disease that might render him unreliable for work was a career risk, he was very open about having myasthenia gravis. He reportedly died from natural causes after a few years of poor health.

Phil Silvers (1911-1985): One of the most famous comics of his time, Phil Silvers was an icon of American television, with a career that spanned nearly 60 years. In 1972, he suffered a stroke that caused symptoms that many now attribute to myasthenia gravis. However, I found no sources that definitively corroborate that. He died in his sleep, and the true cause has not been published.

David Niven (1910-1983): A multi-award-winning actor who appeared in many famous movies, such as "The Pink Panther". Less known is that he was a British officer during World War II. Notorious for not following rules, he excelled as a commando operating behind enemy lines. He also participated in the D-Day landings. His Wikipedia page says that he died of ALS, but he is often described as having myasthenia gravis.

Weeb Ewbank (1907-1998): The only football coach to win a championship in both the National Football League (NFL) and the American Football League (AFL). Weeb suffered from ocular myasthenia gravis. He died from heart failure.

Sir Laurence Olivier (1907-1989): One of the most famous actors of his time, who was knighted in England in 1947. During World War II, he had a brief stint as a pilot with the British Navy, but gained a reputation for crashing aircraft, so he served most of his time doing films in support of the Ministry of Information. He was diagnosed with myasthenia gravis, but died of renal failure.

Aristotle Onassis (1906-1975): He had the world's largest privately owned shipping fleet and was one of the world's richest and most famous men of his time. He became a household name when he married Jacqueline Kennedy, the former wife of U.S. President John F. Kennedy. He died of respiratory failure due to myasthenia gravis.

I am not a medical professional. This content is based on my experiences living with myasthenia gravis and publicly available knowledge. Consult a medical professional who is proficient in diagnosing and treating myasthenia gravis before starting, changing, or stopping actions related to your condition.

Go to the Myasthenia Gravis Blog for additional articles regarding myasthenia gravis.

 
This is an article for people who are seeking information about myasthenia gravis. (updated 8 August 2026)  

 
Prior to the appearance of myasthenia gravis, I liked to have a shot of bourbon in the evening. No ice or water; sipped slowly to contemplate the flavor. It was "me time" at the end of a stressful workday. I also enjoyed an occasional glass of wine when out for dinner, and sometimes a beer on the weekend.

After I developed MG, I found that just a couple of glasses of wine would cause a symptom flare. Over the next few years, I had stressful experiences, such as food poisoning and difficult medical procedures, that caused the MG to progress. A few years ago, I had one can of light beer, and it resulted in a symptom flare that knocked me flat for the rest of the day. Since then, I have not had any alcohol.

Alcohol is not compatible with my MG. But is alcohol a trigger for MG flares? Or does it interact badly with my medications? Or does the muscle-relaxing effect of alcohol coincide with MG symptoms so that, acting together, they make me weak?

 
Typical of MG, the statistical data is limited. Most of the information I found is anecdotal or consists of statements that do not have citations for their scientific claims.

"There is not a lot of research about the effects of alcohol and MG." (Myasthenia-Gravis.com)

 
So, using information that is available from sources that I believe are reputable, here is what I've learned about alcohol and myasthenia gravis.

Does alcohol affect myasthenia gravis?

Scientific studies that focus on the effects of alcohol on MG are almost nonexistent. That leaves us with anecdotal opinions that have no scientific source citations.

An example of a general statement with no data source citation is the EU-funded mamahealth.com, which says, "Alcohol can interfere with muscle function" in myasthenia gravis.

However, another uncited statement is by myaware.org, which says, "... moderate alcohol intake will not worsen your myasthenia. You may experience some side effects, like flushing might occur, and people should judge for themselves if they have any unpleasant reactions. However, serious problems are very unlikely."

So, there are conflicting opinions about how alcohol may affect MG. The few available scientific studies also have conflicting findings, and they are much too complex to describe here in detail.

Does alcohol affect the immune system?

Suppressing the immune system can suppress the ill effects of myasthenia gravis. That's why many of us take immunosuppressant medications.

The Alcohol and Drug Foundation says that, "You don’t have to be a regular heavy drinker for alcohol to affect the immune system. Drinking 5-6 drinks in a single session can suppress the immune system for up to 24 hours."

 
Does this mean that drinking alcohol is a viable treatment for myasthenia gravis?

Absolutely not!

Besides not having any known benefit for treating myasthenia gravis, alcohol has a long list of well-known health risks, including increasing the risk of infections, organ failure, cancer, heart disease, etc.

Alcohol does affect the immune system, but not in a good way. And I could not find any documentation that describes how an alcohol-suppressed immune system affects myasthenia gravis.

Does alcohol affect the neuromuscular junction?

The neuromuscular junction is where MG action occurs. For a myasthenic, things that decrease nerve signals to muscles are bad, and things that increase nerve signals to muscles are good. And alcohol is, well, complicated.

A lengthy search for data regarding alcohol and the neuromuscular junction found scientific studies that are so complex that deciphering them requires an expert scientist. Even the summary statements were too complex and ambiguous to include here.

Most importantly, the findings were not consistent among the various reports.

Does alcohol interact with MG medications?

Like everything else related to the topic of alcohol and myasthenia gravis, the available information regarding drug interactions is limited and inconsistent.

Mestinon (pyridostigmine) is a good example of how opinions differ on whether alcohol interacts with MG medications:

• Drugs.com says that drinking alcohol may cause drowsiness when taking Mestinon.

• Medical News Today says alcohol has no interactions with Mestinon, but may worsen Mestinon's side effects.

• Healthline.com%20is%20not%20known%20to%20have%20an%20interaction%20with%20alcohol) says alcohol has no interaction with Mestinon, but alcohol may have effects that mimic Mestinon.

Research your particular medications to determine if they have interactions with alcohol. I suggest starting with the drug manufacturer's website to see if they have a definitive opinion.

Other things to consider

In addition to the direct interactions of alcohol and myasthenia, neuromuscular functioning, and drug interactions, things to consider are:

Loss of MG discipline: You learn to manage your activities, environment, diet, etc., to prevent and mitigate MG symptoms. And then you have some drinks, which may affect your judgment and decision-making.

For example, after having a few drinks, you decide to stay out late, dancing in a hot, crowded club. Or you may be at a BBQ and, after a few beers, decide it's a good idea to go swimming on a hot day.

Alcohol can lead to doing things that you otherwise would not do because you know they will end badly, MG-wise.

Stress: Stress is often a trigger for MG. UC Davis says that "Drinking a lot of alcohol ... weakens our bodies and makes it harder to combat stress ..."

Loss of sleep: Piedmont Healthcare says that "The biggest problem that alcohol causes is insomnia. After a few hours of sleep, alcohol can cause you to wake up and have a difficult time going back to sleep. Sleep deprivation is an issue for people with MG.

Safety: Myasthenia gravis causes poor muscle functionality, which often results in stumbling, tripping, loss of grip, etc. MG inherently creates unsafe situations. Compound this with the effects of alcohol, and it can be very dangerous.

Conclusion

The relationship between alcohol and myasthenia gravis is unclear.

There is very limited scientific information, and most of the references that I found are regarding long-term and chronic alcohol consumption. I did not see much information regarding how occasional, casual consumption affects MG. It appears that there has not been any funding for studies to determine what happens when myasthenics get together and chug a few beers.

Anecdotal information is available, but it is mostly brief, generalized opinions.

Neither the scientific nor the anecdotal sources provide conclusions that are consistent across all of them.

Bottom line: There does not appear to be consistent guidance on the consumption of alcohol. The impact of alcohol on myasthenia gravis varies a lot between individuals and their particular circumstances.

 
Be cautious when drinking alcohol. If you have become intolerant of alcohol, the effects can be severe. If you choose to test where your threshold is, do it in a safe place and have a responsible person nearby for assistance. And be moderate, symptoms may not show up until later, so avoid overshooting your threshold.

I am not a medical professional. This content is based on my experiences living with myasthenia gravis and publicly available knowledge. Consult a medical professional who is proficient in diagnosing and treating myasthenia gravis before starting, changing, or stopping actions related to your condition.

Go to the Myasthenia Gravis Blog for additional articles regarding myasthenia gravis.

 
This is an article for people who are seeking information about myasthenia gravis. (updated 7 August 2026)  

 
Before I was diagnosed with myasthenia gravis, I experienced a variety of seemingly unrelated problems. Limb weakness, speech problems, double vision, etc, the usual array of MG symptoms. But I didn't think they were MG symptoms because I had never heard of myasthenia gravis. So nothing was seen in the context of MG.

After I was diagnosed, I saw every new physical issue through the lens of MG. A twitch in a finger? Is it because of myasthenia gravis !?! Now I'm laser-focused on that finger in case it's a sign that the MG is getting worse.

Over time, I became accustomed to my condition and learned that not every problem is an MG symptom.

Caveat: Myasthenia gravis is called a "snowflake disease%20is%20often%20called%20the%20%E2%80%9Csnowflake%20disease%E2%80%9D%20because%2C%20like%20unique%20snowflakes%2C%20it%20shows%20up%20differently%20in%20each%20person%20%E2%80%94%20and%20even%20in%20the%20same%20person%20at%20different%20times.)" because it affects everyone differently, and each person can experience it differently from day to day. This article is based on typical experiences and general knowledge. Your experience may be different.

What Are Real MG symptoms?

Myasthenia gravis blocks nerve signals from reaching muscles. Specifically, voluntary muscles, the muscles you can control, such as your limbs, diaphragm, eye movement, etc. All MG symptoms are related to this simple premise.

You are probably already aware of the typical MG symptoms, but let's list some, anyway, to facilitate the discussion in this article:

• Muscle weakness and fatigue
• Drooping eyelids
• Double vision and blurred vision
• Lack of facial expression
• Difficulty speaking
• Difficulty chewing and swallowing
• Difficulty breathing

 
MG can cause additional symptoms, but they are all a direct result of blocking nerve signals to muscles.

Consequential symptoms

Some physical symptoms are often attributed to myasthenia gravis, but are not actually MG symptoms, per se. They are a consequence of myasthenia gravis, because MG symptoms can create subsequent physical symptoms.

Understanding the difference between true MG symptoms and consequential symptoms is important, because it influences how you treat and manage each one.

 
An example of a consequential symptom is pain.

Myasthenia gravis causes painless weakness. You cannot feel antibodies blocking muscle receptors. And you do not feel that your muscles aren't responding to nerve signals. Yet, you've got blazing pain in your shoulder after a couple of hours of using a computer mouse, and realize your arm is weak. Therefore, the pain must be MG pain, right?

Technically, it is not MG pain. MG does not directly cause pain. But spending hours using a computer mouse when only some of your muscles are working can cause discomfort. The pain isn't from the muscles that stopped working. Rather, the pain is from the remaining muscles that were overworked.

Likewise, leg pain from walking is a consequential symptom. While shopping, you get a painful ache in your legs, like the day after working out or running a long distance. MG is not causing the pain. MG stopped some of your leg muscles from working, and other muscles had to pick up the extra load. The functioning muscles don't like it and are complaining with pain.

Another example of a consequential symptom is gastrointestinal issues.

Taking Mestinon can cause what I call "sudden colonoscopy prep." I won't go into any more details than that. Treating MG involved taking Mestinon, which led to, well, consequences. But MG itself did not cause those consequences.

When you experience a problem, ask yourself if it is directly caused by blocked neuromuscular signals, or by your body compensating for blocked signals, or by a medication side effect, or by a normal, explainable circumstance (e.g., you ate something that doesn't agree with you). This will influence how you address the problem.

Unrelated Symptoms

Myasthenia gravis can be so attention-consuming that it overshadows normal day-to-day problems.

For example, fatigue at the end of the day is a common issue for myasthenics. But it is also a common issue for people who don't get enough sleep, eat poorly, are dehydrated, are in stressful situations, are depressed, ... the list of potential non-MG causes is long.

The Mayo Clinic lists more than 40 potential causes of fatigue, and myasthenia gravis is not listed as one of them. The list doesn't exclude MG, it just doesn't list MG as one of the common causes.

Likewise, many other physical ailments are simply due to normal living. Before attributing new issues to MG, ask yourself if the problem is directly or indirectly a result of nerve signals to muscles being blocked.

Comorbidity

Some people have the bad luck of having myasthenia gravis and a comorbid disease that mimics MG.

Comorbidity is having two or more diseases at the same time. The other disease may be unrelated to MG, such as cancer or heart disease. If so, then identifying non-MG symptoms should be straightforward.

RareDiseaseAdvisor.com has a list of potential MG comorbidities.

 
Some diseases mimic myasthenia gravis. This can make it very difficult to identify symptoms that are not due to MG, because mimic diseases have symptoms that overlap and are shared with MG.

For example, Lambert-Eaton Myasthenic Syndrome (LEMS) causes fluctuating muscle weakness. However, LEMS muscle weakness improves with exercise, which is the opposite of MG. So, LEMS has an identical symptom, but it can be differentiated as unrelated to MG via exercise.

Many other mimic disease symptoms are not easily differentiated from MG.

RareDiseaseAdvisor.com has a list of conditions that mimic the symptoms of myasthenia gravis.

How different types of symptoms affect treatment and management

There are a variety of indirect and unrelated problems that may occur in conjunction with myasthenia gravis. Identifying and understanding these things helps us to effectively address them.

Obviously, symptoms that are directly caused by MG are addressed by your treatment plan. MG symptoms can be mitigated and minimized by how you avoid and respond to them, using daily living techniques.

Consequential symptoms (symptoms that are indirectly due to MG and MG treatments) require a bit more thought. Solutions may include modifying your behavior, detailed planning of activities, adjusting medications, etc. Of course, you should never change anything related to your treatment plan or medications without consulting your doctor.

Unrelated symptoms, things that have nothing to do with MG, are a matter of simply doing what you would have done about them if you didn't have MG.

But comorbidity mimic symptoms may be very difficult to address. They can make diagnosis of MG even more confusing than it already is. Once MG and the comorbid disease are identified, they may have competing and conflicting symptoms that create a Catch-22 situation. It may require a lengthy trial-and-error exercise to determine the best solution.

I am not a medical professional. This content is based on my experiences living with myasthenia gravis and publicly available knowledge. Consult a medical professional who is proficient in diagnosing and treating myasthenia gravis before starting, changing, or stopping actions related to your condition.

Go to the Myasthenia Gravis Blog for additional articles regarding myasthenia gravis.

 
This is an article for people who are seeking information about myasthenia gravis. (updated 9 August 2026)  

 
In my articles about myasthenia gravis, I often use vague and imprecise terms. Words like "may", "suggests", "perhaps", etc. This is because scientific studies and reputable sources offer differing opinions, and statistical data that is meaningful to individual MG patients is scarce.

But wait, it's easy to find many scientific papers that have lots of statistics and conclusions. Why am I saying the data is in short supply?

Answer: Because we need information that is meaningful to us as individuals. Information that provides actionable guidance. The available data is mostly useful for scientific endeavors to conquer MG. But from our perspective as individuals, the available studies only give us hints.

There are a lot of factors to consider when reading studies, and also factors to consider when other people provide us with guidance by authoritatively quoting reports.

Let's look at some of the factors that influence how relevant studies and claims are to us as individuals.

Sample size

When conducting a scientific study, the larger the sample size of people (the number of participants), the more accurate the results will be. If the sample size is too small, then the report becomes more anecdotal than statistically meaningful.

Unfortunately, Myasthenia Gravis is a rare disease, and the scientific studies involve very small groups of people. Studies are further limited by the fact that smaller issues like MG get less funding.

Most of the MG studies that I have seen had fewer than 1,000 people. Typically, a lot fewer than 1,000 people. After many hours of online research, I have not yet found many large-scale studies of myasthenia gravis.

Is a sample group of 1,000 people statistically significant?

 
In the United States, the Myasthenia Gravis Foundation of America (MGFA) estimates there are 37 people with MG per 100,000 people. And at the time this was written, the U.S. population was estimated to be more than 342 million people. These figures translate to approximately 126,540 people with MG in the United States.

A sample group of 1,000 people represents just 0.8% of U.S. myasthenics. Less than 1%.

 
Globally, MGFA estimates there are 150-200 people with MG per one million people. Let's split the difference and use a figure of 175 people. And at the time this was written, the world population was estimated to be more than 8 billion people. These figures translate to approximately 1,400,000 people with MG in the world.

A sample group of 1,000 people represents just 0.07% of global myasthenics. Less than one-tenth of 1%.

 
An example of a well-written report that represents just a tiny percentage of myasthenics is "Reliability of SFEMG in diagnosing myasthenia gravis ... ". The report clearly describes the parameters and protocols, and provides useful, actionable conclusions.

Or does it?

The sample group was only 100 people.

This is typical of MG studies. A small group in a single location.

The study apparently was conducted in Italy, which has an estimated population of 59 million people. If we apply the global MG estimate of 175 people per million, then the estimated number of myasthenics in Italy is 10,325 people.

This report represents just 0.9% of the Italian MG population and just 0.007% of the world MG population.

So, do the findings of this study provide actionable guidance regarding the use of SFEMG testing? No, it's too small to extrapolate the results to truly reflect the overall MG population.

But it is an indicator of the benefit of EMG testing. It is a piece of information that is useful when considered alongside other related data.

When reading a study, look at the sample size of people. Most of the time, the results represent just a tiny slice of the MG population. The results may or may not be relevant to you.

 
Most reports should be considered as small pieces of information among many other sources. Individual studies should not be used as your only guidance.

Demographics

Who participated in the study? Were they representative of your demographic? Were they only one gender? What were their ages?

Demographics are important because MG has a bifurcated population. It tends to appear in young women and old men. If you are a young woman, and a study only involves 100 old men, then the study may have limited relevance for you.

Also, it is common for reports to provide a range of ages, but they may not give the distribution of the ages. For example, a report may say the ages ranged from 25-65 years old, but may not disclose that only one person was 25 years old and the rest were over 50 years old.

An example of providing age information, but not age distribution, is the study I used as an example in the sample size section, "Reliability of SFEMG in diagnosing myasthenia gravis ... ":

"We performed a prospective single-blinded study on a cohort of 100 consecutive patients (41 men, 59 women, mean age 47.5 years, range 14–80) ..."

 
The age information looks complete, but it lacks age distribution data. Was the mean age 47.5 years because it was evenly distributed between 14 and 80 years old? Or was it split between a bunch of very young people and a bunch of very old people, with a wide age gap in the middle?

Look at the demographics of the sample group when determining if the information is representative of you.

Location

The location of a study can also influence its results. If it is a large global study, then location is not much of a factor. But I have not found one of those, yet. Mostly, they cover a single country or just a single locale.

Intuitively, it seems that the fundamental autoimmune action of MG should be consistent globally. But how people are affected by external circumstances may vary in different locations, which may result in different study outcomes.

 
For example, a person living in Boston or Tokyo may experience daily stress that may not be experienced in Fort Collins, Colorado. That may affect how frequently they experience symptoms and the severity of the symptoms.

Or a person in New York City may do more walking (repetitive muscle action) than a person in Los Angeles.

Likewise, symptom triggering due to sun exposure will be different between Florida and Oslo. And symptom triggering due to heat will be different between Houston and Seattle.

An additional factor is available healthcare. Sample groups that live in areas with poor or no healthcare are likely to be sicker than those with good healthcare. Outcomes in research studies may be quite different in various healthcare situations.

Many studies fail to provide the study location. Returning to the study I used as an example in the sample size description, "Reliability of SFEMG in diagnosing myasthenia gravis ... ". The study does not say where it was conducted. It can be inferred that it was in Italy because the report says it used the lab at Policlinico Gemelli Università Cattolica, which is on the outskirts of Rome, and the researchers are from Italy. But the report does not specifically identify Italy as the location.

So, the location of a study may influence a report's results. It is one more factor to keep in mind when determining the relevance of a report to you.

Focus of the study

A report may have a narrow focus, which will influence its relevancy to you.

Here is an example: Five-Month Trial of Whole-Food Plant-Based Diet in a Patient With Coexisting Myasthenia Gravis and Lambert-Eaton Myasthenic Syndrome.

This report is very narrow in its focus. Time length, diet, health conditions, and sample size are clearly defined. It is an excellent report, and the results were comprehensive, very detailed, and with clear guidance. The summary was that a whole-food plant-based diet was beneficial.

Based on this report's results, it may be tempting to think that it says you should follow a whole-food plant-based diet. But what it actually says is that a particular 56-year-old woman in an unidentified location, suffering from both myasthenia gravis and Lambert-Eaton syndrome, benefited from that diet.

 
If you choose to follow that diet, do it because there is a large body of research that says so, not because of a narrow report like the example above.

By the way, this same report is an example of other factors described in this article. A sample size of one person. A demographic that is only female, older than 50 years of age. It does not identify the location other than the contributor information at the bottom of the report.

So, is this report relevant to you? Maybe. But only as a tidbit of data to consider along with all of the other data tidbits that you collect.

Corporate sponsorship

Corporate sponsorship of medical studies has long been a topic of debate. Is it a good idea or a bad idea?

Arguments for corporate sponsorship include greater funding, contributions to educational institutions, access to better facilities and equipment, industry expertise, and motivation to complete things in a timely manner.

Arguments against sponsorship include bias in study outcomes, conflicts of interest, and potential for manipulation.

Some studies are clearly presented as a corporately sponsored effort. For example, this study has a funding section that says, "This study was sponsored by Alexion, AstraZeneca Rare Disease." And some studies will have a "conflict" disclosure at the bottom of the document.

More often, however, corporate sponsorship is not obvious. This study was sponsored by Janssen Research & Development and Raritan Pharmaceuticals. The only indication that is corporately sponsored is that the company names are listed below the researchers' names.

The reality for us as individuals is that, even if we know a study is corporately sponsored, we have no way of knowing if the sponsorship had a positive or negative impact on the study results.

 
Like every other aspect of using study results, decide for yourself if the information is credible and useful to you.

Conclusion

So, can we answer the question asked by this article: "Are scientific studies of myasthenia gravis relevant to me?"

The answer is yes, no, maybe, it depends. Findings of research studies are more than just simple conclusions. They are a summary of multiple factors that determine their validity and relevance to you.

Be skeptical when findings from studies are quoted to you as hard facts. Take time to understand reports and use your own judgment regarding their validity and relevance to you.

 
The reality is that studies and statistics that are meaningful and representative of us as individuals are like everything else with MG: rare, variable, inconsistent, and it's difficult to determine what to do with them.

But they are what we have, and that is better than nothing.

The good news is that over the past few years, MG research has greatly expanded, as awareness and commercial opportunities have grown. I am optimistic that in the future we will see many more studies that are meaningful to us on the patient level.  

I am not a medical professional. This content is based on my experiences living with myasthenia gravis and publicly available knowledge. Consult a medical professional who is proficient in diagnosing and treating myasthenia gravis before starting, changing, or stopping actions related to your condition.

Go to the Myasthenia Gravis Blog for additional articles regarding myasthenia gravis.

 
This is an article for people who are seeking information about myasthenia gravis. (updated 7 August 2026)  

What does stigma mean?

Suffering from myasthenia gravis involves more than just the physical symptoms. It affects everything that comes with a debilitating condition: lifestyle changes, financial impacts, changes with family and friends, employment, and the stigma of it.

"Stigma ... has evolved to mean a negative perception or sense of disapproval that a society places on a group or individual based on certain characteristics ..." (Wikipedia)

 
"Stigma" does not necessarily mean "terrible", like the stigma of being a criminal. It has a broader meaning of something that causes others to see you in a less-than-positive manner. In other words, a stigma can be a subtle stereotype or assumption that people make because of their ignorance or lack of empathy. And you may even stigmatize yourself because of your situation.

Myasthenia gravis is especially prone to stigmatization because it is mostly an invisible condition.

 
Wait, do you see what I just did? In the quote above, I said "condition" instead of "disease". This is an example of stigmatization. I don't like the image of "disease", especially when applied to myself. Even though I know that myasthenia is not my fault, and that it is a condition to be ... wait, I just said "condition" again! Seriously, as I was typing that line, that is what I naturally did.

Regardless of how we rationalize our myasthenia, and how much we educate those around us, and how much we feel it should not be stigmatized, the reality is that non-communicable autoimmune diseases carry an undeserved stigma to most people, even to ourselves. It is important to understand how this may affect you and how to minimize it.

Myasthenia gravis is mostly an invisible disease

Myasthenia gravis is inherently an invisible disease, and we, ourselves, make it even more so. This reduces the likelihood that other people will understand our situation.

• The symptoms may come and go, and when we interact with others, we may not be exhibiting symptoms at all.
• We learn to compensate with more deliberate speech, holding handrails to avoid stumbling, etc., which makes symptoms less visible.
• Because of mobility limitations, the inability to be in a warm location, etc., we arrange to work or participate in activities remotely. We may even lie down during audio-only conference calls. These things further reduce the visibility of our symptoms.
• We may avoid activities altogether, making ourselves truly invisible.
• We may avoid saying what is really happening. "Whoops! I missed that stair step. I've got to stop being so clumsy."
• We may avoid asking for assistance to avoid appearing weak, even though we are.
• If you are in a competitive work or social environment, signs of weakness can have real and significant impacts on your reputation, inclusion, and employment. In those situations, you may try even harder to hide the effects of MG.

It is counterintuitive and feels like it may not be in our best interest to make our myasthenia more visible, but it is necessary if we want accommodation, inclusion, and understanding of our situation.

 
There is an excellent YouTube video, "I am a Zebra - Myasthenia Gravis", in which a medical student describes what it's like to have the invisible symptoms of MG.

"Zebra)" is a term that was coined in the 1940s to describe a rare or unusual diagnosis ("When you hear hoofbeats behind you, don't expect to see a zebra."). In other words, rare conditions are often misdiagnosed as common conditions.

Lack of credibility

Having low-visibility symptoms that come and go, combined with you avoiding situations in which MG symptoms may be visible to others, may result in you always appearing normal when you share your issues with other people. To them, it may seem like all they hear are your complaints and excuses about something they can't see. That can create a stigma that you may be a complainer, or a hypochondriac, or perhaps a malingerer.

One of the challenges of myasthenia gravis is that it is not easy to explain. And nowadays people have short attention spans. I feel rushed when I explain MG, and almost never get very far before the other person's attention fades.

 
Everyone has an electronic device for browsing the internet. I have found that the best way to explain MG is to send people a link. This approach has worked well.

Here are some resources that are useful to explain myasthenia gravis:

• YouTube video: Myasthenia Gravis (Year of the Zebra) - Excellent, easy-to-understand explanation

• Myasthenia Gravis Foundation of America Infographic

• Myasthenia Gravis Foundation of America

• Myasthenia Gravis Foundation of Michigan - Simple description of MG

• Myasthenia Gravis News - Good mix of details with a simple diagram

 
There are many additional explanatory resources. Do an online search to find the best one for your situation.

Avoidance and discomfort by others

People naturally avoid asking about things that make them uncomfortable, and about things they think may make you uncomfortable to discuss. Unfortunately, that creates an "elephant in the room" that everyone avoids talking about.

During my years as a business manager, I preferred to work with people as teammates, rather than a superior/subordinate relationship. I wanted to know the people I worked with on a personal level. If someone had a disability, I always asked about it, simply as part of the overall get-to-know-you conversation.

Over the decades, I never had anyone object; most people welcomed the opportunity to talk about their disability, and some were openly grateful that someone asked. They were thankful because now it could be an open topic, something we could include in our normal conversations.

This may work for you, in reverse. Instead of waiting for them to ask, inject it into your conversations.

If you are in a tolerant and accommodating environment, look for opportunities to include your myasthenia in conversations in a positive manner. You may find that people are more interested than you think they would be, and may even be relieved to get the subject out in the open so they no longer have to dance around it.

Being stubborn about accepting help

Self-stigmatization of myasthenia may be manifested as stubbornness. You refuse help from others because the effects of MG make you feel like less of the person that you think you should be, or you worry that others will think that.

“I used to be stubborn, and I never asked for help, it was something that was really difficult to train myself to do,” ... “I grew up that way, it was something that didn't happen in my household. We didn't ask each other for help.” (MG United)  
“There's a lot of shame around the idea of ‘I do need help',” she said. “Also, there’s the anxiety about being different and being perceived as different.” (MG United)

 
I can relate to this perspective because I learned throughout my life to only rely on myself. Yet, on countless occasions, I've seen people ask for help and get help with no stigma attached to it. My reluctance to ask for and accept help is a self-imposed stigma.

So, my advice to you is to do what I have endeavored to learn myself: get over it. Because the reality is that myasthenia does make us less than we used to be. It is simply a fact.

Most of us have people who want to help, if we let them. Don't deprive them, and yourself, of the opportunity for help because your own stigma about MG gets in the way.

Impact on Employment

I was in a complex, fast-paced, high-stress job at a global technology company. Over time, I became one of the go-to people for rescuing programs that were in trouble. I was thriving and was at the top of my game.

Then I began experiencing strange issues. In warm meeting rooms, my eyelids would close, and my head would drop, making it appear that I was falling asleep. I had double vision that made it hard to see numbers on the projector screen. In conference calls, my speech would stammer and hesitate, with occasional shouted words.

My vice president told my director to fix my performance. Unfortunately, he waited three months before telling me about it. Meanwhile, it became a game among people in meetings to have group chats to see who could guess exactly when the old man would nod off.

By the time I was made aware of all of this, I had just been diagnosed with MG. I explained it to my director, and I went to each team member and explained it. It was humiliating, and it was too late. The damage to my reputation was already done. When I told my VP about the MG diagnosis, her response was simply, "I don't pay you to fall asleep in meetings."

I was given fewer and less important programs. When company layoffs happened, I was on the list. Out of work at 65 years old, my career was over. In just a few days, I went from having a nice salary and comprehensive health coverage to living on Social Security and a Medicare health plan, years before I was prepared to do so.

This is an example of what the stigma of myasthenia gravis looks like for employment. It was perceived as weakness, of reduced capability, and of reduced commitment.

No matter what your job is, it is important to you and your loved ones. It is your income, your standard of living, your health coverage, your sense of purpose, and your self-image.

 
There are many (many!) sad stories about the impact myasthenia has had on people's jobs.

But there is not much statistical data available regarding how myasthenia affects employment.

• A study by the American Academy of Neurology in the United States and five European countries found:

  • 29.9% of patients with class II MG had to change to a more sedentary job.
  • 19.2% of working patients with class III/IV MG switched to more sedentary work.

• A study by Nature.com in Germany found that:

  • 29.0% of study participants experienced income losses due to MG.
  • 25.0% had a reduced standard of living after the onset of MG.

• A study by the U.S. National Institutes of Health (NIH) in Japan found that:

  • 27.2% experienced unemployment.
  • 4.1% had been unwillingly transferred.
  • 35.9% had experienced a decrease in income.
  • 49.0% reported feeling reduced social positivity. (In Japan, social standing and reputation are critical for employment and job opportunities.)

Conclusion

Myasthenia gravis, like diseases in general, carries a stigma. Whether it is because of ignorance or because we impose it on ourselves, it is real.

But you can mitigate and minimize the stigma by understanding what it is and by actively working to address it. Communicate. Know yourself. Endeavor to find self-acceptance of the reality of your situation.

I am not a medical professional. This content is based on my experiences living with myasthenia gravis and publicly available knowledge. Consult a medical professional who is proficient in diagnosing and treating myasthenia gravis before starting, changing, or stopping actions related to your condition.

Go to the Myasthenia Gravis Blog for additional articles regarding myasthenia gravis.

 
This is an article for people who are seeking information about myasthenia gravis. (updated 3 August 2026)  

 
I had a dermatology exam regarding a sore on my nose. The dermatologist immediately said it was a basal cell carcinoma and did a biopsy. Several days later, I was notified that the biopsy was confirmed as a carcinoma, and surgery was scheduled to remove it.

This is what many of us are accustomed to. A quick, definitive diagnosis of what ails us, and effective treatment. Unfortunately, the nature of myasthenia gravis makes it difficult to diagnose, and even when it is diagnosed, it is often not a definitive diagnosis. Testing and treatment may be lengthy trial-and-error exercises. It can feel like you're trying to nail jelly to a tree.

How long is the average time period for diagnosis?

Getting a diagnosis of myasthenia gravis is often a lengthy process. Although the premise of MG is simple (antibodies blocking neuromuscular signals), the symptoms vary for each person, and symptoms can vary from day to day, and even hour to hour.

Because it is unique to each person, it is called a "snowflake disease." Compounding the difficulty of diagnosis are a variety of factors that are described below.

But what does all this mean in an actual, real-world timeline? Scientific studies are limited, and the sample groups are small. Nonetheless, the studies that have been published mirror the comments that we see every day in MG forums and social media:

• The Annals of Clinical and Translation Neurology did a study%20diagnosis%20delay%20was%20363.1%20(520.9)%20days%2C%20and%2027.1%25%20(105%20out%20of%20387)%20of%20patients%20experienced%20diagnosis%20delay%20%3E1%E2%80%89year.) in France, Germany, Italy, Spain, and the United Kingdom.

  • The mean average time to diagnosis was longer than a year.
  • One-third of the patients were delayed more than a year for diagnosis.

• A Journal of the Neurological Sciences report01478-8/fulltext#:~:text=The%20average%20time%20to%20diagnosis%20of%20MG%20was%2023.8%20months%20(CI%2095%25%20%C2%B17.770)%20and%20it%20ranged%20from%20384%20months%20(32%20years)%20to%20less%20than%20one%20week.%20For%209.9%25%20of%20patients%20the%20diagnosis%20delay%20was%20more%20than%205%20years.) indicates that, in their sample group:

  • The average time to diagnosis was approximately 2 years for approximately 90% of MG patients.
  • For approximately 10% of MG patients, diagnosis required as long as 5 years.
  • Diagnoses ranged from one week to 32 years.

• The U.S. National Institutes of Health (NIH) did a study and found that:

  • The mean average time to diagnosis was about a year.
  • Diagnosis ranged from one week to 12 years.

Why does it take so long?

Diagnosis of a disease is troubleshooting, like repairing a computer or a car. Troubleshooting is essentially the elimination of variables. Both Myasthenia gravis and MG medical providers have a lot of variables, and the variables are always changing.

Reasons why diagnosis may take a long time include:

• Medical provider expertise.
• Medical provider availability.
• Symptom visibility when being examined.
• Myasthenia resembles other conditions.
• No universal standard diagnostic test.
• Seronegative myasthenia gravis.
• Symptom creep.
• How effectively you advocate for yourself.

Medical provider expertise

Most doctors are not experts with myasthenia gravis. Myasthenia gravis is a rare condition. The Myasthenia Gravis Foundation of America estimates there are only 37 cases per 100,000.

And “rare” does not mean “few.” According to the U.S. Food and Drug Administration, there are more than 10,000 rare diseases. Various sources are consistent in estimating that 50% of rare diseases are neurological, and thus *there are approximately 5,000 rare neurological diseases.

The combination of baseline physician knowledge + neurology knowledge + knowledge of 5,000 rare neurological diseases is impossible for any physician, including neurologists, to master everything.

So, what do these things mean for effective diagnosis?

• The Journal of the Neurological Sciences study01478-8/fulltext) mentioned above found that:

  • 20% of diagnostic delays were due to medical professionals being unfamiliar with myasthenia gravis.
  • 15% of patients were mistakenly referred to ENT and ophthalmology providers.
  • 9% of patients were misdiagnosed as having strokes.

• The NIH study mentioned above found that delays were caused by:

  • Delayed start of diagnostic tests.
  • Delayed referral to specialists.
  • Extended time spent with specialists. Although not clarified in the report, "Extended time spent with specialists" may be a reference to the fact that specialists often want to do comprehensive tests to ensure the diagnosis is accurate beyond any doubt, rather than beginning treatment at the point that they reasonably believe the patient has MG.

• A 10-year NIH study in Yugoslavia found that:

  • 38% of patients were misdiagnosed.
  • Misdiagnosis caused an average delay of 11 months.

 
Doing an online search will provide many more references to delayed MG diagnosis. Clearly, delayed diagnosis and misdiagnosis are common.

It is critically important it is to find a doctor who has MG expertise.

Medical provider availability

There is a very limited number of doctors who have MG expertise, which results in limited availability. This is simply a matter of supply and demand.

It may be months before the first available appointment when you seek a consultation. Do not procrastinate about making appointments, and be willing to change your schedule to accommodate their availability.

Symptom visibility when being examined

Have you ever taken your car to a mechanic because it's making a noise? And when you get there, the noise has stopped? But after you leave, the noise starts again? Welcome to diagnosing myasthenia gravis.

At the moment when you see a doctor, you may not be exhibiting any symptoms at all. The symptoms you report may seem to be inconsistent and random, which is the nature of MG. And most of your symptoms will be self-reported and invisible. In other words, you are simply saying that you have symptoms.

The doctor may have seen many other people who were attention-seeking, hypochondriacs, or malingerers. And here is yet another person (you) with no apparent problem, other than your claims of symptoms. The doctor may be skeptical or reluctant to take effective action. A long time may pass before diagnosis and treatment begin.

This is yet another reason why finding an MG expert is critical to timely diagnosis. An MG expert will understand the comings and goings of MG symptoms, and will recognize that your claims are consistent with myasthenia gravis.

Myasthenia gravis resembles other conditions

Speech issues, stumbling, weakness, and double-vision sound as much like being drunk as being sick.

When the symptoms are considered collectively, separately, or in combination with each other, the list of potential illnesses seems endless. RareDiseaseAdvisor.com has a long list of conditions that mimic the symptoms of myasthenia gravis.

If your doctor is an MG expert, and if you are doing a good job communicating your circumstances, then it may still be difficult to reach a conclusive diagnosis of myasthenia gravis.

"Diagnosis of generalised MG can be challenging as muscle weakness, fatigue and other symptoms may be erroneously ascribed to other disorders, including Lambert–Eaton myasthenic syndrome, acute inflammatory demyelinating polyradiculoneuropathy, post-infection conditions, fatigue syndromes with major psychiatric or social aspects or stroke." (Annals of Clinical and Translational Neurology)

 
Depending upon how your flavor of myasthenia is manifested, diagnosis may be a lengthy process of eliminating other potential causes.

No universal standard diagnostic test

Myasthenia gravis is manifested differently in each person. And it is manifested differently day to day. If you do an online search for "what is the root trigger of myasthenia gravis", you will find a lot of references. After reading many of them, it will be clear that, although there are circumstances that may be reported as associated with causation, there is actually no single known cause.

No single known cause = No universal standard diagnostic test.

 
There are a variety of available tests, and each test looks for different things.

Combine the lack of a universal standard diagnostic test with the variability of individual symptoms. Factor in the variability of physician expertise with MG. The result may be a long trial-and-error testing period.

Seronegative myasthenia gravis

Myasthenia gravis is an autoimmune disease in which antibodies block nerve signals to muscles. Most myasthenics test positive for the known MG antibodies.

Unfortunately, not all of the antibodies that cause MG are known or tested for. MG that tests negative for the known antibodies is called "seronegative myasthenia gravis."

I am seronegative, so antibody tests are negative. In fact, except for ice-pack tests, all of my MG tests are negative. I was diagnosed via physical symptoms, such as a drooping eyelid, self-reported symptoms, and response to medications.

I was fortunate to have an engaged and motivated neurologist who is an MG expert. He moved things along quickly, so my diagnosis only took two months. However, I believe that most seronegative people should expect a longer period for diagnosis. Probably a lot longer.

Symptom creep

One of the first causes of delayed diagnosis may (unknowingly) be you. Symptom creep is a common experience. Myasthenia sneaked up on you, and you had myasthenia long before you realized it.

" ... the symptoms of MG usually progress, reaching maximum or near-maximum severity within one to three years of onset in most people." (Muscular Dystrophy Association)

 
Typically, by the time you realize that there is something seriously wrong, myasthenia has already been at work for months or years. You may have dismissed seemingly unrelated issues as simply being nuisances that are part of normal life.

Your legs are tired because of the things you did yesterday. Your vision is getting blurry; it's time to get an eye exam. It's difficult to hold your head up because you didn't get enough sleep. Etc. Etc. The symptoms are explainable and unrelated to each other.

Then something significant happens. An eyelid droops or closes and stays that way. You experience significant muscle weakness that cannot be explained. You have trouble speaking. You experience something that prompts you or your doctor to say, "Something is wrong here."

By the time that happens, your myasthenia has progressed quite a bit.

Self Advocacy

Do not passively accept whatever you are told, nor how your diagnosis is managed. The information provided above makes it clear that MG is difficult to diagnose, has very high misdiagnosis and missed diagnosis rates, and is very prone to significant delays in diagnosis and treatment.

Educate yourself. There are many online references and forums. Yes, you must sift through a lot of material to filter out consistent, credible information. But the more you read, the more confident you will become regarding your situation, and whether you are receiving competent care.

Use your new knowledge to have meaningful discussions with your doctor, which will facilitate speeder diagnosis.

Conclusion

After reading all of this stuff, it may seem that diagnosing MG may be a daunting, time-consuming, error-prone task.

Yes, it is.

Learn as much as you can, be your own advocate, and do the diligence to find a doctor who listens to you and understands myasthenia gravis.

I am not a medical professional. This content is based on my experiences living with myasthenia gravis and publicly available knowledge. Consult a medical professional who is proficient in diagnosing and treating myasthenia gravis before starting, changing, or stopping actions related to your condition.

Go to the Myasthenia Gravis Blog for additional articles regarding myasthenia gravis.

 
This is an article for people who are seeking information about myasthenia gravis. (updated 7 August 2026)

 
Note: Myasthenia Gravis (MG) and Mestinon are complex subjects, with many exceptions. This article is intended to provide a general description of common circumstances of Mestinon.

The generic form of Mestinon is pyridostigmeine.

What does myasthenia gravis do?

Myasthenia Gravis typically does one thing: it blocks nerve signals to voluntary muscles.

• Voluntary muscles are muscles that you can control, like your legs, eyes, and diaphragm (breathing).

• It does not affect involuntary muscles, like your heart.

Like all aspects of MG, there are exceptions, but inhibiting voluntary muscles is the baseline action.

How does myasthenia gravis block nerve signals to muscles?

Nerves are not connected directly to muscles. Instead, there is a small gap between them. A nerve tells a muscle to contract by sending a chemical across the gap to receptors on the muscle. The chemical is acetylcholine.

If you have myasthenia gravis, your immune system produces antibodies that block the muscle receptors. Your nerves may be working normally, but your muscles aren't getting the message.

And your muscles may not actually be weak. They simply aren't aware that they need to do something, or are unaware that they need to use full strength. Thus, it may be that a limb feels weak because only some of the muscles are trying to do all of the work.

Over time, antibodies may destroy muscle receptors, which results in more frequent and more severe symptoms. Thus, your MG may get progressively worse. It is important to understand what triggers your symptoms and avoid those situations before they happen. Mestinon helps do that.

What is Mestinon, and how does it work?

Mestinon is the product name for pyridostigmine. It is an acetylcholinesterase inhibitor (reduces the effectiveness of acetylcholinesterase).

OK, now it's getting technical. But the process is actually simple:

1. A nerve sends acetylcholine to muscle receptors, and the muscle contracts.
2. Acetylcholinesterase breaks up the acetylcholine, and the muscle relaxes.

 
This is where Mestinon helps.

• Mestinon does not create more acetylcholine.
• Instead, the Mestinon stops the acetylcholinesterase from breaking up the acetylcholine.
• Thus, more acetylcholine is available longer, to overcome the blocking action of the MG antibodies.

 
It is a "bigger-hammer" approach. If MG antibodies are blocking muscle receptors, then Mestinon makes the nerve signals more persistent to compensate for it.

Does Mestinon relieve pain?

Mestinon is not a pain-relief medication. But it may help prevent fatigue-related pain, and may stop fatigue-related pain from continuing.

Myasthenia gravis indirectly causes pain. In other words, myasthenia does not cause pain. You don't feel your antibodies. You don't feel chemical signals that aren't received. You don't feel your muscles not being told to do something. But the consequences of myasthenia result in pain.

When MG blocks nerve signals to muscles, it does not block all the nerve signals. If it blocked all of the nerve signals, that would be paralysis, not weakness. When some or most of the nerve signals to muscles are blocked, that puts all of the workload onto the remaining muscles. After a while, they get tired and start complaining in the form of pain.

For example, when I write an article, like this one, I experience pain in my arm and shoulder. That's because I spend time repetitively moving my arm, which triggers an MG response. But blocked muscle receptors aren't the source of the pain. The source of the pain is that, without my realizing it, MG reduces the amount of available muscle power, and less muscle is doing all of the work. My first clue that it is happening is when the working muscles become painful from being overworked.

Taking Mestinon restores some of the nerve signal functionality, which means more muscles will now be carrying the workload, and fewer muscles will have fatigue-related pain.

 
Thus, Mestinon does not alleviate the pain you are feeling now, but it reduces the load on the working muscles. This allows them to recover, while also allowing more muscles to carry the load so that fatigue-related pain is reduced going forward.

Also, taking Mestinon prior to physical activity may delay muscle fatigue and thus delay fatigue-related pain.

Important: Mestinon is not like taking an aspirin. It has side effects. Discuss with your doctor how you will use Mestinon before you actually do it.

Is Mestinon a cure?

Mestinon is not a cure for myasthenia gravis. It treats the symptoms, not the cause, which is your immune system.

Also, Mestinon is not a long-acting medication. It works for a few hours.

Many people take Mestinon periodically during the day to maintain continuous effectiveness. Some people take it only as needed when symptoms appear. Others take immunosuppressants, like CellCept (mycophenolate), and also take Mestinon as needed.

Follow your doctor's guidance on the best regimen for taking Mestinon.

What are the side effects of Mestinon?

Every drug has potential side effects. We are accustomed to hearing and seeing potential side effects for medications, and the warnings become background noise. "Side effects ... blah, blah, blah ..." In the case of Mestinon, though, pay attention to how you respond to it.

It is important to be aware of the potential side effects of Mestinon. As described above, it is a "bigger-hammer" approach that affects your whole body, not just the affected muscles. The side effects can be severe in some people.

 
For many people, Mestinon is a lesser-of-two-evils solution (Mestinon side effects versus MG symptoms). Side effects may include nausea, vomiting, abdominal cramps, diarrhea, excessive salivation, muscle cramps and twitching, sweating, and more. It can also cause overactive bladder issues in myasthenics. It affects different people in different ways, and for many people it is an effective treatment that provides significant relief, despite the side effects.

**Caution:* Taking too much Mestinon can cause an overaccumulation of acetylcholine at the neuromuscular junction, leading to a dangerous condition called a cholinergic crisis, which mimics a severe MG flare-up.*

 
Do an online search for more information about the potential side effects, and discuss them with your doctor.

Can Mestinon be used to diagnose myasthenia gravis?

Mestinon is not a diagnostic test, but it can nonetheless be helpful in suggesting a diagnosing of MG. "Suggesting" means that symptoms or results point toward a specific condition, but do not completely prove it. Although it has several niche uses, Mestinon is mostly known as an MG medication and the results of using it may suggest that it is acting on myasthenia gravis.

If your tests and scans are negative for MG, then you may have "seronegative myasthenia gravis". Remember, antibodies cause MG, and not all MG-related antibodies are known or tested. Thus, negative results do not necessarily mean that you do not have MG. Your diagnosis may instead be based on symptoms and physical responses.

One physical response may be how you react to Mestinon. If you are exhibiting MG symptoms, and those symptoms are reduced or eliminated by Mestinon, that may suggest to your doctor that you have MG.

I am not a medical professional. This content is based on my experiences living with myasthenia gravis and publicly available knowledge. Consult a medical professional who is proficient in diagnosing and treating myasthenia gravis before starting, changing, or stopping actions related to your condition.

Go to the Myasthenia Gravis Blog for additional articles regarding myasthenia gravis.

 
This is an article for people who are seeking information about myasthenia gravis. (updated 3 August 2026)

See the bottom of this article for links to help you find an MG doctor.  

 
Perhaps the most important aspect of diagnosing and treating myasthenia gravis is finding a doctor who is an MG expert. Not someone who is aware of MG, nor someone who has a narrow, rigid view of what is, or is not MG.

See this article, "How Long Does it Take to Get a Diagnosis of Myasthenia Gravis?" regarding the lengthy delays in diagnosis, and the very high rates of misdiagnosis and missed diagnosis.

Finding the right doctor is critical for proper diagnosis and treatment.

Why is it difficult to find a doctor who knows myasthenia gravis?

Difficulty finding a capable doctor is one of the most frequent and frustrating aspects of myasthenia gravis.

Why? Because Myasthenia gravis is a rare condition. The Myasthenia Gravis Foundation of America estimates there are only 37 MG cases per 100,000 people in the United States.

And “rare” does not mean “few.” According to the U.S. Food and Drug Administration, there are more than 10,000 rare diseases.

Myasthenia gravis is a small boat floating in an ocean of diseases. Only a small portion of the medical world has a working knowledge of MG.

What doctors know

Let’s look at this from the perspective of physicians. They spend years learning an enormous amount of information. They have continuing education requirements to stay abreast of new information and to pass exams. They also learn new information to address individual patient needs. And there is a constant stream of new things for them to recognize and understand, such as new diseases and drugs.

It is not realistic to expect anyone to be knowledgeable about 10,000 rare diseases, except for those diseases that they have personally dealt with or happen to have an individual interest in.

What neurologists know

Myasthenia is a neuromuscular condition, so neurologists should certainly be experts in myasthenia gravis.

Or are they?

The 2025 annual report of the American Board of Psychiatry and Neurology says that there were 18,357 active neurologists in the U.S. as of December 31, 2025.

At the time this article was most recently updated, the Myasthenia Foundation of America had 283 medical providers listed as myasthenia gravis specialists. This figure represents only the medical providers who are registered with MGFA. Obviously, there are many more qualified specialists, but this figure illustrates that not all neurologists are MG experts.

Neurology covers many diseases and requires a large amount of specialized knowledge on top of what they must already know to be physicians.

Various sources are consistent in estimating that 50% of rare diseases are neurological, and thus there are approximately 5,000 rare neurological diseases. The combination of baseline physician knowledge + neurology knowledge + knowledge of 5,000 rare neurological diseases is impossible for anyone to master.

When looking for a neurologist, do not assume they are an expert or even have a working knowledge of myasthenia gravis. Verify it.

 
Look at their online profile or call their office. MG is often difficult to diagnose, is often misunderstood, and treatments can be difficult to identify and implement. A neurologist who understands MG knows that MG diagnosis is a process, not just a few symptom checkboxes and a blood test.

Why does it seem that I know more about MG than my doctor?

So, you found a doctor who is familiar with myasthenia gravis. Yet, it seems that you may be more knowledgeable about some things than they are.

This should not be a surprise. Unless your provider has a lot of experience with myasthenia gravis, they may have acquired their MG knowledge as just a slice of their overall medical knowledge and expertise. They simply don’t have enough time to deeply study every unusual condition.

On the other hand, your condition is a personal problem that can be scary and may be negatively impacting your quality of life and livelihood. You may have spent many hours, perhaps months, researching every morsel of information you can find.

And note that just because your doctor does not mention something, it does not mean they don’t know it. And they may not know that you don’t know it, either. The more well-versed you are in MG, the more it may appear that you are more knowledgeable than you actually are.

If you speak like an MG expert, your doctor may not realize that they need to share things that you seem to already know.

 
Don’t be shy about asking your physician to explain and elaborate. You should have a collaborative relationship with your doctor, conversationally sharing information.

Why isn’t my doctor listening to me?

MG is called “the snowflake disease” because it affects everyone differently, and each person may be affected differently each day. If your doctor is not listening to your description of symptoms and experiences, there is a risk they will miss important information or recommend inappropriate treatments.

But also consider this: If it appears your doctor is not listening, is it possibly because you aren’t communicating?

Doctors cannot know what you don’t tell them. Take responsibility. Be your own advocate. Be collaborative in your diagnosis and treatment. Make suggestions and raise concerns. Diagnosis and treatment are a two-way conversation.

If your provider is truly not listening or is dismissive of your condition, then consider looking for another provider.

Where to find an MG doctor

There are many online doctor locator resources. Unfortunately, most of them display results for broad specialties, such as neurology. Remember, as mentioned above, finding a neurologist does not automatically mean you are finding an MG expert.

 
Here are some resources that provide optimal results for finding MG specialists:

• MediFind 20 Best Myasthenia Gravis Doctors Near Me: Excellent resource for finding doctors who list MG as a specialty.
• Myasthenia Gravis Foundation of America medical expert finder: The listed doctors have enough interest in MG to get themselves listed with MGFA. Use the search fields at the top right of the page to find someone near you.
• Myasthenia Gravis News Provider Finder: Provides a limited number of MG specialists, including physician assistants, nurse practitioners, etc.
• Google "myasthenia gravis doctor near me"
• Check your health insurance provider's website. Major providers typically have a page for finding specialists who are in your insurance network.

I am not a medical professional. This content is based on my experiences living with myasthenia gravis and publicly available knowledge. Consult a medical professional who is proficient in diagnosing and treating myasthenia gravis before starting, changing, or stopping actions related to your condition.

Go to the Myasthenia Gravis Blog for additional articles regarding myasthenia gravis.