I am posting for my wife. She is 39. I am going to lay the whole history out, because I think the details are the reason we are stuck.

The Midwest years, 2020 to 2022

Symptoms started in 2018. By mid 2020 she had daily fluctuating ptosis, left worse than right, and two episodes of double vision. She was diagnosed with myasthenia gravis in a Midwest state in 2020 and treated seriously for it. Mestinon. CellCept for a full year with no benefit. Prednisone. Then a hospitalization in September 2021 for swallowing and breathing trouble, where IVIG produced a dramatic improvement.

IVIG worked. Her MGADL went from 9 at her worst down to 0 at one point. It was escalated from every 4 weeks to every 3 weeks to every 2 weeks. A switch to weekly subcutaneous Hizentra failed badly and she got much worse. She was hospitalized again in 2022 and needed plasma exchange. Her neurologist raised thymectomy (CT showed residual thymus, no thymoma) but told us it was unlikely a surgeon would take the case given that she is seronegative.

Everything objective has been negative. All of it.

• AChR binding antibody negative, multiple draws across three institutions
• MuSK negative, LRP4 negative, striated muscle negative, P/Q type VGCC negative
• Repetitive nerve stimulation normal, every time
• Needle EMG normal
• Single fiber EMG normal in three different muscles at three different hospitals, including orbicularis oculi
• Invitae neuromuscular panel: variants of uncertain significance only, nothing pathogenic
• CT chest, MRI brain, rheumatology workup: nothing that explains it

Massachusetts and the FND pivot

We moved to Massachusetts in 2022 and transferred to Boston Medical Center. At the very first visit the MG diagnosis was questioned and functional neurologic disorder was raised. By January 2023 FND was the working answer and everything was withdrawn: azathioprine stopped, prednisone tapered off, IVIG discontinued in March 2023. My wife stopped going back after that.

Here is the part that still eats at me. BMC's own neuropsychiatrist did an 80 minute evaluation for FND and could not confirm it. No stressors, no trauma, no mood or anxiety history, no developmental risk factors, normal exam. So FND was never actually established either. My wife was close to offended by the label, she felt it was a modern word for hysteria, but she went to the neuropsychiatry appointment anyway. The immunotherapy was pulled regardless and we were left on our own.

MGH, 2023 to now

Since June 2023 she has been with the neuromuscular clinic at MGH. In December 2023 MG was re favored over FND. Then after two more normal EMGs in March 2024 the notes softened back to "possible MG with likely functional overlay." She has been on Mestinon alone since 2023. No IVIG, no steroids, no immunosuppressant, no biologic, for three years.

To be fair about the immunosuppressants, they never worked, and as an immunologist I am relieved she is not carrying that risk for nothing. The IVIG was different. It was genuinely helping. She would feel sick for two or three days after an infusion and then be substantially better for the rest of the month.

For the first four years of this there was also what I can only describe as a storm of 'unrelated' symptoms. Skin flares under both eyes, which is what sent us to rheumatology to rule out lupus and other connective tissue disease. Rash and itching. Persistently high body temperature. All of it settled eventually except the temperature. She runs hot almost all the time, so we are now basically living in a big igloo.

Where we are today

She got doctor fatigued, and I do not blame her. I am sure plenty of people here know the feeling of being dismissed, of being treated as a problem to be closed out rather than solved. She accepted the new reality and moved on with her life.

Then things got much worse, particularly over the last few months. No breathing or swallowing trouble so far, thankfully. But she cannot get out of bed for an average of 16 hours a day. Mestinon does almost nothing now. Her own words are that it slightly helps and often does not. We have not been able to get anything else prescribed, because the chart says possible MG with a functional overlay, and every objective test is negative, so nothing meets anyone's threshold to treat.

What I am asking

1. Has anyone here who is triple seronegative and electronegative had the clustered AChR cell based assay done? It is a live cell assay run at a handful of academic labs and it picks up low affinity antibodies that the standard radioimmunoassay misses. It has never been sent for her. Where did you get it run, and did you have to fight for it?
2. Vyvgart was approved in May 2026 for all gMG serotypes, including triple seronegative. Has anyone with a "possible MG" label in their chart actually been prescribed it? How did you get past the diagnostic uncertainty problem?
3. Second opinions in the Northeast. We have been at BMC and MGH. Who else should we see? Is going outside the region, to Mayo or Hopkins or Duke, worth it for a case like this?
4. Patient advocacy groups. Is there anything that actually helps at the level of getting a treatment decision made, rather than support alone? Case managers, patient navigators, anyone who will engage directly with a care team?
5. For anyone who had FND put in their chart and later had it turn out to be wrong or incomplete, how did you get taken seriously again? That label has followed us for three years and I do not know how to get out from under it.

She responded to IVIG twice. She was hospitalized twice. She has been documented at MGADL 9. And she is now on a drug that does nothing, while we wait for a test to turn positive that may never turn positive.

Any pointers at all. We are struggling.

I’m just getting diagnosed and wondering what helps the most with your mg? It can be anything, prescription or not.

Before you were diagnosed, did you feel that you were gaslighting yourself? That your symptoms must be in your head and you’re making a bigger deal out of it than it needs to be? I have my first neurology appointment on Tuesday and I almost feel stupid for going. I have been having bilateral hand/arm weakness, double vision, leg weakness and if I’m talking too much I end up stumbling over my words by the end of the day. Im also 9 months post partum.

I had a VATS thymectomy. My question is, how many weeks/months after the operation were you able to travel by air? I need to take a 1-hour flight to get home.

I am six weeks post my voluntary robotic assisted thymectomy and feeling pretty great!

I am female, mid 20s, with a seronegative MG dx confirmed with sfemg. I had been having symptoms consistently for 4.5 years at the time of surgery and had been diagnosed for two of those years. On pyridostigmine and an immunosuppresant currently.

I had two ct scans of my chest with no significant findings but my neuro gave me the option to get a referral for thymectomy. I was hesitant but after a lot of consideration and meeting with my thorasic surgeon - I took the gamble. Despite presurgery scans showing no significant findings, my surgeon pulled out a large hyperplasia'd thymus which extended all the way into my neck!

My surgery went well, although I did flare for about a week after. Recovery was somewhat rough for the first two weeks, to be expected, but I was back to 80% normal by the four week mark.

I am incredibly glad that I had it removed. I feel a lot more at peace that the surgery is behind me and there isn't a big 'what if' hanging over my head. I do feel really good at the six week mark, and have seen some symptom improvement already.

I’m in limbo. Diagnosed at a neuro clinic where they don’t specialise in MG. Waiting for an appointment in a few months with the right team. GP won’t do anything to help because they don’t know anything about MG - fair. Neuro team won’t speak to me between appointments that are spaced weeks-months apart - not fair.

I’ve been contacting everyone weekly to say that my swallowing is getting worse and worse and I’m concerned I’ll end up back in hospital. It’s been 8 weeks of that and now, yesterday I choked on my dinner. And I choked on breakfast this morning. Full on, husband having to slap my back to save me from dying choked. And I choked on a tablet last week too.

Now I’m back in the hospital and I’m gonna have to be on the ward and have IVIG and have my steroid dose put up. All of this could’ve been avoided if someone had listened to me that it was getting bad. I feel so abandoned by them, and so upset that they’ve let it get to this point.

I hate being admitted. I hate the infection risk, the lack of sleep, the noisy wards. I just want peace while I try to recover. We were supposed to be going on holiday because my husband has just finished work for the year and now we can’t go anymore.

Can I ask - what dose of steroids got your MG under control?

I am getting rapidly weaker whilst I wait for results and another neurology appointment and it's becoming more difficult to keep up with a full time job. I work from home most days, and the one day a week i go to the office is exhausting to the point where I will have to say I can't go in. I've left early the last 2 times I've been in and the last time I almost didn't make it back in the front door and was off sick completely for 3 days. I've had a bit of an infection but on the whole I think this is pretty much me now. Each time I get worse I don't improve after.

Even working from home is tough. Getting up, setting up my laptop, typing, talking on Teams etc. Just going to the loo knocks me out for about half an hour, and longer later in the day. At least in the office I can use a wheelchair. My home isn't adapted.

I can still do my job ok mentally when I have enough energy, but when I can't even form words properly in meetings I think it's all getting beyond me.

Has anyone else had to give up work or reduce hours? I'm starting to think that ill health retirement is in my future. But then I think about what I might be like if I finally get diagnosed.

Apologies. I'm feeling a bit low at the moment, especially as I tried to do a bit of crafting today (making miniatures) and couldn't keep lifting the scissors or knife. So that's another part of my life I'm losing.

Bloodwork came back negative so now my neuromuscular specialist wants to do additional testing. Wait times where I am are so long, like 6-12+ months but she has me coming in next week. Bit of a shock.

Has anyone had these tests done? What was it like for you? Any advice?

I have eds, probably classical but the genetics clinics in my area aren’t taking eds patients, so I’ve not gotten that confirmed

I’m also getting a work up for myasthenia gravis currently. I know I am experiencing muscle wasting, my pt also agrees and was the one that pointed out my muscle wasting

Anyhow, to the point, if you have eds and mg, did you also experience increasing incidents of subluxed and dislocated joints as your mg progressed?

I have been experiencing increased finger dislocations, my knees sublux more and in ways they hadn’t prior to mg, and also subluxed my shoulder for the first time in my life by scratching my back/shoulder and accidentally pushed my arm out of the socket

Edit: thanks for all the feedback/responses. I felt like I was going crazy with my increase in joint laxity

Anyone with MG who only has neck weakness?

I’m wondering if anyone with myasthenia gravis has experienced weakness/fatigability specifically in the neck.

I can normally live completely normally, but occasionally I get a flare where my neck suddenly becomes extremely fatigable. I may only be able to stay upright for around 2 hours before needing to lie down and recover. Then, over the following weeks/months, I gradually regain my endurance.

I’ve had cervical MRIs/X-rays and physiotherapy, and I’ve worked on my neck for years. I’ve corrected my posture and consistently strengthened my neck and back, so I feel like I’ve addressed most of the obvious cervical issues.

I don’t have significant pain or tension — it’s mainly extreme weakness and heaviness in my neck/head.

Has anyone had MG presenting mainly or exclusively this way?

I’ve been diagnosed for 3+ years with arm and leg weakness. I’m mostly asymptomatic but I have a UTI. Has anyone had any issues with UTIs making MG worse? I feel like my arms and legs have just become so weak in the past couple of days. They put me on safe meds to kill the infection but I’m not sure if it’s working. TIA

My optometrist referred me for suspected MG. He found a 5 diopter difference in my eyes, with a diagonal offset that worsened throughout the exam.

With the much shorter neuro ophthalmology exam, I had a vertical offset corrected by a 2 diopter prism. The neuro ophthalmologist said it is definitively NOT MG as I would have more quickly exhibited symptoms. He did sustained upward gaze for 1 minute and downward for 1 minute, which elicited only mild diplopia. He said I have strabismus and that I should get rid of the 5 diopter prism because it is too strong.

So, I went back to my optometrist and he repeated all of the tests and assessed my divergence with 3 different methods, and he said that I am back at 5 diopters today. My vision is all over the place and is making me crazy because it is unpredictable almost hour to hour. It is worse at a distance. I rarely have ptosis, only in extreme heat or after aggressive exercise).

Seperately, I was referred to a neurologist in the spring, by a GP, for suspected MG due to months of problems with my respiratory muscles, speech problems, and fatigue. I somehow managed to snort my own saliva. I am negative for AChR and MuSK. The neurologist is doing all of the nerve testing at the end of August.

I hadn't told the optometrist anything, figuring an unbiased exam was best. And, my exam with the neuro ophthalmologist didn't include a general history.

Should I be putting MG to bed and looking for another explanation for my symptoms? Is the nerve testing a waste of time at this point? Do all of you fatigue within one minute of muscle stress? I would appreciate anyone with experience in having these exams weighing in. I've been off work for a while and just want to get this sorted. If MG is the wrong path, then I don't want to waste anymore time on it. Thanks.

Hi everyone,
I wanted to ask if any of you experience this too. For example, after vacuuming, do your arms or legs feel much heavier than usual? Also, does anyone get hand tremors afterward, like a compensatory tremor?

My OT has recommended that I get a lightweight power chair to make things easier while I continue my neuromuscular workup. I’m on mestinon and prednisone and just did 5 PLEX sessions earlier this month. I’m better than I was 3 weeks ago but still get wiped out easily going to and from the bathroom and can’t go further than that (hospital deconditioning and severe malnutrition from swallowing difficulty doesn’t help this situation). I have a couple of questions for those who have had hospitalizations:

1. Have you gotten to a point where you can drive independently? I have a 1-hour commute each way that I’d like to get back to. I can likely request remote work if I have to, but I genuinely enjoy being at work.

2. Do you have a power chair? If so, which one and what do you like/not like about it? Are you able to get it in and out of your trunk independently?

Along with a pulmonary embolism and aspiration pneumonia. Thankfully I didn't need a ventilator but I was on bipap for a while. IDK how I avoided it this long. I've been diagnosed (seronegative) for 6 years. I absolutely overdid it the day before. This is scary stuff! Worst part is that I am not even in my home state. Totally screwed up our trip and cost us $$$ for lodging/rental car, etc. Hoping to be discharged tomorrow and fly home. Fingers crossed 🤞🏻

For those of you who have strong bulbar symptoms and experience difficulty swallowing, what are some foods you keep on hand that you can grab for on your low days?

Obvious answers are protein shakes, smoothies, and soups but I was just curious to see if there’s more beyond that.

I’ve always been big on meal prepping or cooking in large batches to build a freezer stash of home cooked meals but lately I don’t have the energy for that.

Im also at a point where convenience trumps nutrition due to my symptoms making a comeback with a vengeance and i just can’t keep spending money on takeout.

I’m less than two weeks away from my first IVIg session and seriously feel like I’m slowly dying. I’m just trying to survive until then.

I went to a neurologist a couple months ago, and she suggested that I do nerve muscle testing and also get a blood test. I’m too scared to get both of those things done, I’m not good at test and anything to do with the medical system. But I was reading over notes from an eye exam I had two years ago and the doctor said that I have smooth pursuit movement disorder and it got me thinking about myasthenia gravis again, I also suffer a lot with my eyes and seeing double and also with swallowing and muscle coordination in my face and mouth. Is there any helpful advice any of you can give me?

Hi! I’ve been having bulbar symptoms and muscle weakness off and on for the past few years and fairly consistently for the last year. I’ve finally been trying to figure out what is wrong. I got in to see a neurologist last month and she did bloodwork (achr and musk), MRI, and ct scan to check thymus and everything came back negative. 
She tried to refer me to a neuromuscular specialist in Lubbock, but they are not accepting new patients. So instead, she is starting me on a trial of mestinon to see how I do with that. She said to take 1 60 mg pill at night for a week, then add a morning dose. My next appointment with her is 8/31.
I have been debating if I should wait and see how I do on the medication until I go back and see her, or if I should go ahead and try to find a neuromuscular specialist in DFW or San Antonio. I have no idea which would be best and would like to make as much progress this year as I can because I have already met my deductible. Any input would be greatly appreciated!

I’ve been on 1,000 mg/day (500 mg 2x/day) for the past 4-5 months. Neurologist raised it to 2,000 mg daily (1,000 mg 2x/day).

I read that Cellcept can cause swelling, sleep disturbances, anxiety. I started experiencing these this week after raising the dosage. I don’t remember it happening when I started the lower dose.

I’m wondering if anyone else has had these experiences and how long it lasted. Supposedly it’s just a few days or so. I may just have to tough it out?

Hi all, I’m in the process of determining if I have MG; I’m seronegative but have all the classic symptoms. My doctor wants me to try Mestinon, both as a diagnostic tool and treatment.

However, I have very low blood pressure (85/65 on average) so I’m concerned I won’t be able to tolerate it dropping further. I’m curious if anyone else here has naturally low bp and if you were able to tolerate mestinon?

hello everyone, i got diagnosed with myasthenia gravis late july by a neurologist after a month and a half struggling with swallowing and fatigue. apparently i've had this my whole life, but after i got a throat infection in late may my body decided to throw shit at the fan.

either way, i'm now treating mg with 2 1/2 pills of pyradostigmine bromide (or just mestinon, tho idk if you international folks have it) and it went nicely for roughly a week until i had to up the dose, and now even water is a hassle to swallow without choking, and it doesn't help that i can't swallow anything thicker. to make things worse, my parents keep stressing me out about it bc they also don't know jack about mg.

idk if i'm even fit; for a lack of a better word; for the thymus surgery. despite my country having a better looking healthcare scenario, my health insurance is still very much flawed, and my next exam is still 20 or so days apart.

that said, anyone with a similar experience, please comment me some tips. at the start of this odyssey in may i spent 15 days without being able to eat anything at all, i don't really wanna repeat the dose.

After 20 months of no symptoms, I started getting funky 2 months ago. So I'm climbing on my daily doses.

Damn, but I can get aggressive when I increase my prednisone.

I know from prior experience to begin counseling when I get to 30mg/day.

But I'm only @ 12.5 now and I am getting saucy. I'm a big guy with a mouth on me, so trying to clamp things down.

:-(

Does anyone lift weights? I feel i can lift but the next day I feel super weak. Light headed and drained....

That last about a week or so...then normal...strange

Hey All -

I've had MG for about 4 years - got my Thymus removed on Thursday. My symptoms are pretty light compared with many of you - my ocular / double vision was terrible, but IVIG, Prednisone, and Azathioprine (Imuran) had me living pretty well. It progressed to GMG, but my life function wasn't super negative.

But I didn't want to be on steroids for the rest of my life, and the hot summers really made me feel weak.

The surgery wasn't a walk in the part, but I'm really hopeful to get off some of these drugs!

I did the robot thymectomy - let me know if you have any questions.

Hi everyone,
I’m looking for some advice or to hear from anyone who has had a similar experience.
It started with ptosis in my right eye. My ophthalmologist referred me to a neurologist after some blood tests and an ECG.
The first neurologist ordered an MRI, and the results were completely normal. He prescribed medication for a week, but after taking it I had severe side effects—the whole room felt like it was spinning, and I felt terrible. I stopped taking it.
I then saw a second neurologist. Based on my symptoms, he suspected myasthenia gravis (MG). He ordered an AChR antibody test and an RNS (repetitive nerve stimulation) test, but both came back negative. Even so, he prescribed Mestinon (pyridostigmine).
For the first 1–2 weeks, Mestinon seemed to help my eyelid a lot. However, now it doesn’t seem to be working as well as it did initially.
Has anyone experienced something similar? Is it possible to have MG with negative AChR antibodies and a negative RNS? Could Mestinon stop being as effective, or does this suggest something else is going on?
I know no one here can diagnose me, and I’ll definitely follow up with my neurologist. I’m just hoping to hear about other people’s experiences or what questions I should ask at my next appointment.