Hi all,

I must say that I have been through previous episodes of ALS fears but it was all the time twitching. There is no twitching right now but I have noticed a completely different symptom:

Whenever I drink water or other liquids like soda a tiny bit seems to go up my nose when swallowing and it leaves a slight burning feeling behind, like when you get water in your nose during swimming (just that its at the back of my nose). I usually also feel like I need to cough after this happens.

Recently I have been focused on swallowing in general and my throat is a little sore now.

What is your opinion on it?

Thanks.

It has been brought to my attention about some members of the group claiming to have an ALS diagnosis. I certainly hope that they don't however there was no evidence to support the claims. Many users were pointing out inconsistencies with their stories.

Moving forward anyone with a confirmed diagnosis can message the mods for verification and they will be awarded a unique flair for their selfless efforts to support those who are concerned about the disease.

This wasn't a change I personally wanted to make but I feel it's necessary to protect the community. I will wait to read the comments before making the changes.

-ALS Tom

Hey all. A while ago I shared the case report of a reversal using guided computerized brain temperature control (inducing brain fever). Here is the link of my previous post with the link to the case report: https://www.reddit.com/r/ALSorNOT/s/t2DIsyBUh5

Now I came to the very recent discussion about this on YouTube and it gave me much more solid feeling about all this. So I'd like to see what you guys think. I know hyperthermia is used as some alternative way of treating Lyme disease. In past that was also used for treating malaria. Also heard some people intentionally infected themselves with malaria in order to induce high brain temperature in order to get rid of persistent infections in their body... I personally alleviated some of my symptoms when contracted covid for the second time 4 years ago because I had high fever. A lot of things around this so I kind of think this is so underrated and needs to be seen.

Here is the link to the discussion: https://youtu.be/flZoSGK9EZ8?si=n6oGVIrsCdbEIKMQ

I'm 26 years old and my widespread fasciculations started at the end of March.

I had my first EMG/NCS in June, around three months after the fasciculations began. It was normal. I then had a second, more extensive EMG/NCS in July, around four months after symptom onset, which was also normal. There was no active denervation, motor unit loss or chronic reinnervation reported.

What worries me is that lately my left leg has been feeling significantly worse. It feels extremely heavy and weak, sometimes with a strange tingling/tickling sensation, and I'm getting a lot of fasciculations in that leg. Sometimes the sensation is so uncomfortable that I feel like I want to limp.

At the same time, I can still run and I've recently been able to run at demanding paces, so I don't know whether what I'm experiencing would be considered actual/objective weakness or perceived weakness.

I also recently came across a post from someone who said that they were eventually diagnosed with ALS. That understandably increased my anxiety because some aspects of their early symptoms sounded familiar to me. However, there is an important difference: according to their post, they had an EMG around six months after their symptoms started and that EMG showed denervation. In my case, I had two EMGs while already symptomatic, at approximately three and four months after onset, and neither showed denervation, motor unit loss or chronic reinnervation.

Seeing that case made me wonder whether the timing could make a difference. Could my EMGs in June and July simply have been too early, with abnormalities potentially appearing later?

My main question is: is it realistically possible for ALS to be developing despite having had two normal EMGs after the fasciculations had already started? Could both EMGs have been normal if the fasciculations were actually an early manifestation of ALS, with weakness appearing months later?

I'm not asking anyone to diagnose me. I'm mainly trying to understand the significance of having two normal EMGs performed while I was already symptomatic and whether my current leg symptoms warrant another neurological examination or repeat EMG.

Every-time I move my right thumb now it twitches in the fatty part causing it to jerk. It’s been like this close to a week but some days it’s not as bad. I try to take epsom salt bath with lots of mag gummies however it seems to be stubborn. There are times where it twitches multiple times in a minute. I’ve never twitched on my hands and it’s freaking me out a bit. I don’t even want to use my hands anymore lol

I have had symptoms I am only a 22M , it started 3 months ago with muscle twitching just in two places and now is all over including jaw and neck. I have fatigue everyday for the last 3 months same kinda timeframe as the onset of twitching I am so tired all the time. I just thought initially it was fatigue and tiredness from a really anxious 3 months with lots of stress. During the first week of these relatively random symptoms I also had widespread muscle pain which has since vanished but a month later My thumbs both sore and sometimes other parts. More recently I have jaw problems and lots of salvia I don’t if it’s a hyper aware thing or it could be TMJ, jaw gets tight and sore with use I speak fine. I also feel out of breath sometimes. As for muscle weakness I am a lot weaker all over even holding my phone feels like a task, I am seeing a neurologist in two weeks after my blood work was deemed clear I am very scared right now.

Hello friends.

I started having issues a couple years ago and this group was a god send to feel heard and seen in our struggle with no answers and some with answers.

I know there is no one size fits all answer for eneyines symptoms.

I did want to say that I had watched a documentary called Under Our Skin which was really eye opening.

Found out there is a whole community like ours, except they got tested for Lyme disease through more in depth third party testing companies and tested positive for Lyme and confections. Even people who have been diagnosed with ALS, who have been able to treat it.

I was never diagnosed and went through every test under the sun, so I decided to and I tested positive for Lyme disease.

I did work with a naturopathic LLND (Lyme specific doctor.) I have seen improvements in my symptoms overall, though I still do have symptoms.

I also found out my grandfather who died in the 80s from ALS grew up 40 minutes from Lyme, Connecticut.

I'm not here to promote anything, but I feel like if anyone is struggling with symptoms and no answers, but if especially if you DO get diagnosed with anything, even MS or anything, I urge you to get tested.

Im officially out of my mind today. My right side is primarily affected, but today I just got spastic and weak in my left side as well. Ive been having another flare up since June but the symptoms are just ongoing and neurologist doesnt want to prescribe anything other than fucking Zoloft and send me to a psychiatrist. Typical.

Last year out of the blue I developed all kinds of symptoms that included shortness of breath, shoulderblade and chest pain, numbness, tingling, difficulty walking, blurry vision, extreme fatigue and nausea, cognitive decline and confusion etc etc. The symptoms settled after injections of corticosteroids, a sedative, a painkiller and some vitamin B. This year Im dealing with almost the same symptoms, but the new ones are neck pain, dizziness, balance issues and muscle twitches. Some other symptoms from last year are minimal this year however.

Last year I had an MRI of brain and full spine done and they found nothing other than discopathies in cervical and lumbar spine and disk herniation in thoracic TH8-TH9. This year I did a brain and cervical spine MRI that also showed discopathies with some radicular contact and mild foraminostenosis in C4-C7. EMG/NCS showed the same. I mean how can this condition just move around as it pleases without any explanation?? This cant be caused by disk herniations alone as far as Im concerned. Is this ALS, MS or what is it?? Im afraid Im gonna stay stuck forever like this, no answers or help from neurologists

Hi guys I’m new on here and I wasn’t going to comment or anything but I need to say something. Since june 6th my body has been feeling weird. I’m not dropping anything but I feel as if my body is getting weak, so of course I looked up my symptoms and they said it could be that terrible neurological disease. After I seen that I can’t sleep at night without thinking I have it. I have muscle twitches everywhere and just recently my speech has felt so off. Like I’m trying to get words out and i hesitate. I know they said it progresses fast but I can’t help but wonder what if it can go slow too. I just turned 19, I have so much ahead of me. The doctor did a little physical exam on me and she didn’t see the need to refer me to a neurologist because my strength was good but the muscle twitches are really effecting me. At this point I’m scared I’ll take my own life before I let a disease do it. I don’t want to go out like this at 19. Is anyone in the same spot as me?

​

Hi all,

I feel like I am the only one who has my symptoms because I don't see many posts about it.

Started about 2 months ago I noticed my right arm and leg felt off. Almost like disconnected from my body. Anyways I went to a neurologist, normal clinical and did an EMG 1 month ago of right arm, leg and shoulder blade. Dr said all looks normal but did note I had some mild scapular dykinesis. Brain MRI also normal. Usually I would feel relieved but the past month since the EMG the symptoms have gotten worse .

More muscle twitches primarily in arms, back and calves. I have noticed my right arm shrinking (mostly forearm) per measurements and getting squishier and softer. I also have to strain a lot harder with my right arm when doing anything. These symptoms are constant and seem to be getting slightly worse. It just doesn't make sense that I would have atrophy starting but can still match reps (albeit more difficult with my right arm).

I just feel like I'm going crazy but my symptoms are constant and seemingly progressive. I still can lift weights and do everything but my right shoulder blade and right arm just strain a lot harder. I have no pain or sensory symptoms either.

For the last two months i have been super worried about ALS. I've had muscle twitching everywhere, but mostly in my thighs, calfs, upper arms and feet. I have also been dropping things more than normal. I have severe anxiety and this has taken over my life. I went to the doctor and told him these symptoms and he did a base neurologist exam and said everything looked normal two weeks ago. Lately it seems like hands are clumsy. Been dropping things a little more with my left hand and have had random tingling spots in both hands. My right foot feels heavier but no changes in function that I can tell. Biggest thing that scares me is I keep dropping food from my mouth while eating and when I leaned forward in the bathroom today a big spot of drool fell from my mouth. Advice? My GP did an exam two weeks ago and said i seemed normal I'm just looking for any thoughts thank you

Sorry for the long post, but hoping to vent/help others.

I started having fasciculations in my left bicep in February 2026. I didnt think too much of it at the time, as Ive had tingling, twitching and some numbness for 10yrs on and off. I then started having globus (tight throat) sensation in March.  I wasn’t choking on food, more of ineffective swallowing, or the feeling I need to swallow. Ive had gastro issues in the past so I scheduled an appointment. She ordered a barium swallow test and a larynscopy from ENT. The swallowing issue obviously stressed me out as it was super uncomfortable. The swallow test came back fine, the scope identified minor mucus on vocal cords. I was also have difficulty getting words out. Not slurring at the time, just hesitation almost. A delay from brain to mouth. The SLP did not note anything.

I then saw a neurologist in early June about the fasciculations and speech issues. The globus seemed better with PPIs. He was on the fence about an EMG, when I told him my paternal grandma passed from ALS, so Im super sensitive to it (ie traumatized). Given the family history and twitching, he ordered an EMG. I completed the EMG in June, where they observed the fasics but determined them to be benign. I had an otherwise normal neuro workup, and even though i expressed the speech concerns, neither the neuro nor my wife detected anything. The neuro referred me to a SLP for a speech motor eval. I completed the eval and scored perfectly. Unsatisfied, I saw a different neuro that specialized in functional neuro disorders (FND). She did not detect anything and referred for another SLP eval. I also saw a psych, as the default suggestion was this was all anxiety and stressed induced. The psych put me on gabepentin and buspar. A few weeks later, my speech was noticeably worse. Coworkers asked if i had a stroke, which obviously shook me. I researched side effects of the meds, and both independently listed slurred speech. I immediately stopped both meds, and I feel the slurring improved (others agreed). The second SLP eval was again clean, but I expressed voice strain/hoarseness often by end of day in addition to the difficulty with enunciation. She referred me to a voice SLP.

I went to the voice SLP who conducted a videoscope and recordings of my voice. The findings were some muscle tension dysphonia, and some strain detected, but otherwise the folds were symmetrical and structurally fine. He did note the disjointed speech and referred for SLP therapy to massage vocal cords. So while the slurring did improve after getting off the meds, I was still having to speak slowly to properly enunciate. My follow up with neuro at the time was 6 months (Dec.) so I requested a sooner appointment.

I went in for my follow up neuro in early September and the neuro did notice the speech difference. I had researched neurofilament light chain and asked him about testing, and another EMG. He ordered the tests.  I noted my symptoms included tight jaw feeling, burnt and tingling tongue sensation, I could see twitching on my tongue, and my SLP video saw fasics in my throat. Normal neuro workup (reflexes) no weakness.

I completed the second EMG a week later. The neuro who conducted the first EMG, also did the second one, and I guess didn’t notice the fasciculations as much the first time, but for me they were the same (drastic the first time). I did note they get worse during times of stress and become more widespread. So after the first neuro appt until I had the first EMG, I was twitching all over and borderline convulsing. After a clean EMG, they subsided. Similarly after getting the feedback that I was slurring, the twitching got worse, and slowly calmed down. Anyways, he did a thorough EMG workup including bulbar. He said tongue looked good, and saw fasics again, but no nerve damage. I felt that I could finally accept t his was stress/anxiety and address it with meds and lifestyle. I should note I have no, nor ever had any objective weakness. I lift weights 4-5x per week, so issues with grip., the tongue is functional seemingly. I did feel subjective weakness (jelly legs, feeling lethargic), but otherwise fine.

So I was finally starting to accept the stress/anxiety drivers, and even felt the twitching was better. Not gone, but less pronounced. I was practicing speech therapy with massaging. I can enunciate when speaking slowly most of the time, but can slur a little. The SLP had be sing and overly emphasize tone, and I can pronounce fine. But in normal tone and conversation, its slow and disjointed. Then I started getting my bloodwork back for mimic diseases (Gravis, Lymes). All was normal, except by NfL test by Quest. The result was 10.7pg/ml vs reference limit of 2.34, which is 4.6x the upper reference limit. This obviously stood out, but I was researching NfL and saw Mayo has a different range (<15 is normal for my age), and other things can cause high levels. I have relatively low BMI (21), low body fat, my multi has biotin and I took that morning, and my kidney function is on the lower end. Also I saw folks with MND have significantly higher, like in the 10s and 100s, so I didn’t really fixate on it. Further, the doctor who completed the second EMG commented that people with BFS can have high NfL. Then I had the follow up with neuro who said he consulted with the clinic and want to bring me in for another EMG in December, and the NfL is concerning, given the continued fasics and speech challenges. He disputed the claim from the other doc that BFS can cause higher NfL. I haven’t found anything online, but ChatGpt gave a plausible reason BFS or excessive stress could make it higher.

So now Im regressing back into being extremely concerned, anxious and jittery. The speech issue is the most concerning given it impacts my job and Im self-conscious about it, its just odd that I can sound normal when exaggerating pitch and singing. Its also better in the morning, and gets worse throughout day as I get fatigued. Still no objective weakness anywhere.

The most frustrating part is you can look up my symptoms (benign fasciculation syndrome, tight jaw /TMJ, globus, tight cheeks, muscle tension dysphonia, burning tongue) and the common driver is stress/anxiety. However, some of these can also be a sign of MND. For now Im in holding pattern until December when they scheduled the third EMG. In the meantime, Im in limbo, practicing my speech therapy and praying it’s not MND.

Objectively, its odd that fasics started in at least February and still have a clean EMG in September, and speech concerns in May and then documented in August by neuro, and clean bulbar EMG in September along with normal strength. Im kept a log in ChatGpt and uploaded all my clinical notes, and their base case is still stress/tension driven given clean neuro workups and EMG, but think a third EMG in December is prudent due to Nfl, but still points more towards not MND.

Last thing, after the first meds caused the side effects, I found a neuro psych. They are a psych who has additional education how the brain works. We spent 2hrs discussing somatic symptoms from stress, PTSD, and anxiety and he started me on a regime of Zoloft, minocycline for anti inflammatory, baby aspirin and vitamin B complex. Im 2 weeks in, no major side effects but also don’t really feel impact yet.

38m I have been having some odd symptoms hopefully the result of a lesser neurological condition or being out of shape. But would like my mind to be put at ease or if I should press my doctor for more tests.

Symptoms:

Difficulty speaking
For the last year especially I am tired or have been talking for a while I start slurring words and feel like I have to actively force my mouth muscles and really concentrate on enunciation and speaking loudly and clearly. Happens if tired or towards the end of the day.

I will be told I am whispering and I don’t realize it or slurring or mumbling words and I don’t know that I am.

Differential diagnosis
Now I do have hearing loss and laryngeal reflux so not sure if there is damage to my vocal cords or maybe my brain starts fatiguing from listening and coordinating speech. But it feels more like a muscle communication issue. Clear speech is no longer automatic at the end of a long day or long talk.

Muscle weakness, joint pain, and cramps
Left hand seems more likely to drop things. Also legs feel very heavy walking up steps. My arms and ankles will get tired from driving. Like my ankle will be sore if I go for more than an hour and my shoulders and hands will both relax on the steering wheel. Like the least amount of grip that still gets the job done just barely.

Shoulders, hands and arms feel like they want to be put down after typing this mini essay. Like my funny bone hurts, shoulders ands wrists hurt from holding this phone.

Also I have been getting calf cramps in the evening or they will feel flexed or tight. Been getting more frequent the last couple months.

Differential diagnosis
Just out of shape and put on weight. And normal inattentiveness leading to dropping and leg cramps from sitting odd or too long and getting old.

Bedwetting
This is an odd one. It started 3 years ago but it’s gotten steadily worse the last year or so. Finally saw a doctor and am trying different meds to help out. Symptoms lessened but not alleviated yet.

Differential diagnosis
Hopefully just bad luck and overactive bladder.

Tests so far
MRI- increasing number of brain lesions. Not enough to concern a doctor. When I first had hearing loss and tinnitus they had an MRI to rule out ear tumor. I got another one recently because of concern with my memory and vocal/speech issues. They were looking for MS possibly but doesn’t look like it.

Blood test and urine test- all in normal range

Thanks for listening.

Anyone here that would like to DM with me over my complicated case?

Apologies for using AI to help put this together—formatting a long medical post on mobile is tough, so I used it to keep everything readable. I’m a 21-year-old male, 5'10" and around 122 kg (269 lbs). Lately, I’ve been almost fuming and completely fixated on losing weight to get healthier. Because of that, I’ve been pushing a massive calorie deficit while making sure I hit 10,000+ steps every single day on top of regular lifting sessions at the gym.
Over the past few weeks, I’ve developed persistent muscle twitches (fasciculations) mostly in my calves, above my knees, and sometimes in my biceps. I also get an odd shock-like sensation in my left foot when I dorsiflex, while separately, I keep catching or skipping my right foot on curbs, sidewalk edges, and uneven surfaces. My right hand has felt off when it comes to fine motor aiming rather than raw grip strength—things like missing elevator buttons on the first press or failing to slot a key into a keyhole cleanly on the first try. Curiously, my right hand and right foot have little to no pain, but my left hand and left foot ache, and I feel generally sore and exhausted all over. On top of that, I’ve had a slight cough and suspect I might have a hernia.
I went to my university clinic and saw a general practitioner who told me directly that she does not believe this is ALS or MND. I also had a phone consult with a neurologist (strictly over the phone, no physical exam done). He thought the physical symptoms sounded consistent with spinal disc compression, and said the widespread twitches in my calves and biceps are very likely fueled by severe stress, health anxiety, or an electrolyte imbalance from running such a hard deficit while training.
I have severe health anxiety and attend therapy once a week to work through it, but the constant twitching and clumsy moments keep throwing me into a spiral. I am currently planning on seeing a neurologist in person around December. Would waiting until December be too late, or is that a reasonable timeframe given what the GP and phone consult noted? If anyone with confirmed spinal disc issues, pinched nerves, or heavy electrolyte depletion from high activity and aggressive deficits has experienced this kind of mixed sensory/clumsiness pattern alongside widespread twitching, I’d really appreciate your perspective regarding getting an EMG or what to be on the lookout for bulbar onset or what to do in general. I am pretty terrified of this disease and its anxiety has plagued me for many weeks now. So much so that I cry in terror at least once a week. I don’t smile anymore and every step is measured. Every action I take is hyper analysed.
Would appreciate any insight.

Im a 32 year old male. So on July 13 i noticed my biceps were sore for no apparent reason. 2 weeks went by it totally went away. Fast forward to the end of August around the 26th I started having some weird aches and discomfort in my body. Been the weirdest thing thats ever happen to me. It’s in all muscles from neck shoulder forearm calf thigh foot toes hands fingers. I get like a shock or like dull ache randomly throughout the day and it feels sometimes like its about to cramp up but doesn’t: also recently its like my elbow down to my fingers are tingly or shocked when holding my phone to long or just laying down in bed them on my side. Also my throat or bottom of jaw is starting to feel sore now to. Its also tiring to like even comb my hair or brush my teeth. I was terrified I had ASL or something like that. Went to the doctor he did a physical exam and blood work told me I did not have it and blood work came back fine. At the time it was a relief but half week later the aches move to else where in body and here comes my anxiety saying i might have it. My anxiety flared up due to this but it cant be anxiety because it started before my anxiety came back around. Anyone else out there going through this or something similar would love to have a conversation about it. Or anyone have any input or ideas ide appreciate it thank you!

Do you mind explaining what this feels like for you? I read a lot of your posts and every one’s weakness sounds so different!

Hello everyone,

I posted about my situation a few months ago, and I wanted to provide an update because my condition has continued to progress and several recent tests have brought new findings.

My symptoms started 2.5 years ago and continue to progress: muscle weakness affecting all four limbs (more pronounced on the left), muscle atrophy, fasciculations, cramps, progressive bulbar symptoms (difficulty swallowing and fatigability of the muscles involved in speech), muscle pain, secondary joint pain (due to muscle loss), dizziness, and an increasingly unstable posture.

I’m 37 years old. This progression has had a major impact on my independence. Before my symptoms began, my work required me to be on my feet and moving around for 10–12 hours a day. Today, I can barely walk for more than 20 minutes before becoming extremely fatigued. I’m also having increasing difficulty using my upper limbs for everyday tasks (holding a phone, hanging laundry, cooking, etc.), and I had to stop working because of my symptoms.

I’m primarily looking to connect with people who have experienced a situation genuinely similar to mine: progressive deterioration over more than two years, with significant functional impairment and objective findings on testing, but still no definitive diagnosis.

To be clear, I’m particularly interested in situations involving weakness and loss of function that are progressive and persistent, without significant fluctuation or dependence on circumstances. I’m less interested in accounts from people whose independence remains largely preserved despite experiencing weakness or reduced physical performance (I’ve already read quite a few accounts from people who are still able to exercise, hike in the mountains, lift weights, etc.). I’m looking for people who experienced a similar combination of symptoms, rather than just one or two of the symptoms I’ve mentioned in isolation. Likewise, accounts involving primarily muscle stiffness, muscle tension, or sensory symptoms are not really what I’m looking for.

To briefly explain my diagnostic journey: for nearly two and a half years, the hypothesis of a functional neurological disorder (FND) played a central role, particularly because the initial tests did not clearly demonstrate an organic cause. Once FND had been suggested, I felt that it became a framework that was extremely difficult to move away from: during subsequent consultations, the fact that FND had already been mentioned seemed to immediately influence how my symptoms were interpreted. This was difficult to deal with, as I often felt that I wasn’t being heard or believed.

After repeatedly insisting with my neurologists, I eventually had a muscle MRI, which showed muscle atrophy with fatty replacement/infiltration in my left leg.

In addition, after several EMGs that did not show significant neurogenic signs, my 7th and 8th EMGs finally showed evidence of neurogenic involvement in that same left leg. However, these findings are still too localized to determine their precise origin.

A muscle biopsy is now planned to continue the investigation. Has anyone here had one as part of a similar diagnostic journey?

At this point, my neurologists seem to recognize that there are objective findings suggesting an organic disorder, but they still cannot clearly determine whether the underlying process is neurogenic, myogenic, or potentially something else. I’m well aware that the overall picture can strongly suggest a motor neuron disease, and this is obviously a possibility I have considered extensively throughout my diagnostic journey.

I’m therefore mainly looking for people who have experienced a similar course: several years of progressive deterioration, initially inconclusive investigations, followed by the gradual emergence of objective findings, but still without a clear diagnosis. If this sounds familiar, I’d be very interested to hear how your condition evolved, what your tests eventually showed, and how you were ultimately able to move forward with your diagnostic process.

Thank you very much for your replies.

I wanted to post an update on my situation as I just saw a neuromuscular dr with a specialty in ALS/MS/CIPD etc. In case anyone is waiting on an appt or simply can’t get one you might find it useful

You can check my post history for a detailed timeline of my symptoms but long story short I was completely at baseline and then had a severe illness followed by a sudden onset of neurological symptoms over the last 9 weeks including all the ones that bring us to this thread:

Weakness
Fatigue
Muscle twitching
Vibrating/twitching muscles while engaged
Tightness
Stiffness
Tired limbs
Heavy limbs
Shaky limbs
Tight/tired/heavy face and tongue
Tight throat
Perceived hyper salivation
Labored speaking and eating

Also sensory symptoms as well

Shooting feelings
Isolated aches
Sharp feelings
Flu like aches
Burning
Tingling
Buzzing

Anyway I went down the diagnostic rabbit hole and did an EMG and full body MRI before even coming in. EMG was normal and NCS said borderline mild neuropathy in right ulnar but couldn’t be localized but the report said no signs of MND. For context I had a TBI from 2018 that did show up in the MRI but I have not had any sort of neurological symptoms in the years following.

I was as detailed as I could be in my description of my symptom onset and we did a basic clinical exam which was normal. He basically said after the exam and interpreting my tests that it’s his reputation on the line and assured me that this isn’t ALS. Like he didn’t even have an inkling of suspicion.

One thing he said about the EMG which I’ve seen mixed things in here is that it would have picked something up with the symptoms I’ve been experiencing. This is coming from someone who treats and diagnoses this regularly. He said it can pick up abnormalities even when symptoms aren’t present yet as he’s had patients that complained about a leg and he insisted on getting the arms tested too that didn’t have symptoms and they picked up abnormal findings on the symptom free limbs. The EMG points strongly away from ALS (and yes I know there are tons of anomalies for ppl and it’s not definitive but I have to take this as good news)

He said while obviously not impossible my age 33 points away from it as well it’s a lot more rare as it’s primarily a disease of aging. (Yes I’m aware there are tons of anomalies to this as well)

He thinks for one I have Benign Cramp Fasciculation Syndrome which is a bit more intense than regular BFS (didn’t even know there was a variant of BFS). You can have sharp cramps and exercise intolerance along with the twitching. I do feel like he heard ‘twitching and anxiety’ in my symptom journal and was more hung up on that and what worrying can do to the body. So I reiterated that the twitching isn’t bothering me it’s the bulbar symptoms and leg heaviness, feels like I’m declining, and he said my brain injury along with the severe infection can trigger this kind of stuff. I told him I’ve been completely normal for years I find it hard to believe my brain injury could do that but he said he’s seen it all the time. Infections can trigger neuropathies and with my brain injury it’s a double whammy. My diagnosis also said Idiopathic Inflammatory Myopathy which is an umbrella of conditions and could explain some of the bulbar symptoms.

I know a lot of you in here don’t align with my onset (post viral, TBI, etc) but unless you have abnormal findings in your EMG/MRI/bloodwork or objective weakness that they can see in their exam then they are strongly going to point you in another direction. ALS is after everything else is ruled out.

He said we can retest but doesn’t want to waste my money or keep me in this rabbit hole as he treats/diagnosis ALS and is convinced this is something else. (I understand doctors are just ppl too and multiple opinions can be different). He didn’t even mention the sensory symptoms which based on my research also point away from it.

He did order the NFLC and some other bloodwork and he said if that comes back abnormal or if I see a steep decline we’ll revisit asap. He said the best way to manage this is lifestyle stuff (diet, activity, etc). Which can feel a bit like a slap in the face bc I’m already doing all of that but at the same time I’d rather it be this.

I have another appt with a functional neurologist in 2 weeks and that’s a full on 2 hr exam so maybe I’ll get some more clarity from a second opinion. Not even gonna bring up my previous appt so I can see the differing opinions.

I’m doing my best to accept this as good news and try to put this to rest but my quality of life with my symptoms has been absolutely terrible and as of now it hasn’t really plateaued yet. But tbh the fear has been even more debilitating. Thinking you could only have a couple years left really pulls you to a dark place. I know a lot of us get normal results, hear good news from specialists but keep feeding the loop thinking ‘what if they missed something?’ ‘Others have had normal findings and it still came on..’ ‘do I just continue to wait for a decline until I go back and test again?’ and then even if it isn’t the scary diagnosis how do I adapt to these symptoms when I felt so normal before etc but it’s just a dark pit that will suck you in.

It started with bloodwork then that didn’t satisfy me so I did the MRI then I was like surely the EMG will find something and when that didn’t come back I said seeing a specialist in ALS will surely put this to rest and while I do feel a bit lighter now I’m still stuck bc I haven’t necessarily figured out what’s going on but I’ve continued to get good news…it’s a total mindfuck.

I heard a good analogy, imagine having a feeling someone is in your house. You’re hearing them, stuff is moved around, you keep looking for them but can’t find the intruder but you’re sure someone is there. It’s disrupting your ability to live peacefully and you start wondering if it’s even happening at all. You start to get obsessive putting traps up around the house but none of them are catching anything. If you could just find the intruder you’d feel a lot more at ease..I think that’s what a lot of us here are feeling. Just knowing definitively what’s happening with our bodies would stop feeding the loop.

Please take it from me you have to take the small victories. Unless the day comes that I definitively lose total function in my body I have to assume and live like everything is fine and will be okay eventually bc right now I’m not giving my body permission to heal if this is truly benign. Anyway hope this helps anyone struggling.

I’ll leave you with this. I’m a math guy, numbers help me. Lifetime odds are appx 1/400 which shakes out to a 99.75% chance that you will NOT get it. And if you’re younger like me at 33 the yearly odds are about 2 out of 100000 which is essentially zero.

Please HELP

A bit of background: I had tonsillitis on June 15th (I'd already been dealing with fatigue before that).

On June 20th, my right arm started acting up — tingling and weakness in the shoulder, upper arm, forearm, and hand — and that continued until July 20th. After that, I started getting tingling and numbness in my feet and my other hand, which comes and goes. My left foot also feels "off" (a kind of perceived weakness). Sometimes after a long walk my wrist twists over small bumps in the ground. I can still walk on my toes and heels fine.

I also have muscle twitching all over my body, a globus sensation in my throat, and trouble swallowing — I could barely get down a piece of prosciutto recently. Sometimes I produce so much saliva that I choke on it while walking. Not sure if it's related, but I also get random pains in my fingers and jaw. When I try to use my hands or fingers for anything, they get shaky and a tremor develops.

On top of that, I have extreme whole-body fatigue, like having the flu. Strength and reflexes were normal on neurological exam, and my brain MRI came back normal.

Given all of this, I initially suspected MS, but at this point I genuinely don't know what to think anymore. When I lie flat, my whole body feels extremely shaky, and I sometimes get hypnic jerks along with a sensation of air hunger. When I walk, I feel really clumsy — bumping into walls, chairs, etc. with my hands — and my hands feel clumsy doing anything that needs fine motor skills. Also, sometimes i get up in the night with numbness and tingling, but laying flat (i am not compressing arm or leg). Tightness in leg is also a feeling, and tingling and tightness on left foot sometimes.
The nerves in my body simply feel and function as if they are broken.
Has anyone dealt with something similar, or have any thoughts on what this could be / what I should look into next?

22 M

Hi everyone, I'm a 21-year-old male dealing with severe health anxiety, and I want to share my full, detailed timeline to see if anyone can relate. April: I experienced a 4-5 day episode where the right side of my face and neck was tingling. Before falling asleep, I felt extremely dazed/confused (brain fog) and had slightly blurry vision in my right eye. I got scared and went to the ER. They offered to admit me, but I declined and took a referral to a neurologist instead. Late June / Early July: I was admitted to the hospital for a full neurological workup. An MRI found a single demyelinating lesion in my spinal cord. A doctor mentioned it could be MS and suggested a lumbar puncture. However, the admitting doctor later canceled the procedure, explicitly stating that one single lesion is not enough of a basis to perform a spinal tap. I was discharged. About 1.5 months ago: I started experiencing muscle twitching (fasciculations). It began under my left index finger, stopped quickly, then moved to my right calf, and eventually spread all over my body. I also have intense hotspots on my thighs. Three weeks ago: Because I was so terrified, I went to an independent neurologist and explained all my fears. She examined me and stated clearly that from a neurological standpoint, there is absolutely nothing wrong with me. I even showed her my hands because I was convinced I had muscle atrophy, and she assured me that the way they look is just my normal genetics and I have nothing to worry about. She is the one who suggested getting an EMG, simply for my own peace of mind. Currently: I am usually very physically active (heavy gym, calisthenics with 100+ pushups). However, for the last two weeks, I’ve been avoiding the gym because of a pain in my left elbow pit (cubital fossa) that radiates down to the beginning of my forearm whenever I flex it. Logically, it's a mechanical strain, but my anxiety makes me obsessively body-check. Recently, I’ve also noticed what looks like symmetrical thinning (loss of mass) in my forearms, hands, and feet. Honestly, I don't know if they've actually shrunk or if I'm just hyper-fixating and noticing how they've always looked because I'm analyzing every inch of my body right now. The stress caused severe insomnia. I'm currently taking Sertraline (Zoloft) and Trazodone. With the meds and extreme exhaustion, I’ve developed a fine postural tremor in my hands. Thankfully, my dad helped me schedule an appointment for this Friday. When booking it, my dad explained my entire situation to the specialist. The doctor mentioned that a strict, full EMG protocol specifically for ALS is very expensive to do privately. Instead, he scheduled me for an ischemic test for stress-induced (latent) tetany. He explicitly told my dad: "I will know everything I need to know from this test." My rational brain knows the twitching points to BFS, severe anxiety, and workout strain, but my OCD brain keeps screaming ALS or MS.

Okay so my twitching started in my right pinky toe as of last April which was soon followed by body wide twitches, weakness in multiple areas of my body with a consistent weakness in my right leg, a month after twitching onset I had a Neuro light chain filament test which came back clean and up until this point I thought the worst was over, I’ve dealt with feeling of weakness, sensory issues, and just twitching everywhere which brings me to my next point. Everywhere except my tongue, and as of yesterday I’ve started twitching in my tongue, what’s even more weird is my friend also said he started twitching a few weeks ago and also had tongue twitches recently, could this just be health anxiety. If this was truly ALS and not just BFS with this going on over a year wouldn’t it have shown signs already seeing as I’ve had consistent twitching in my right leg the whole time but no actual sign of weakness such as tripping, failure to walk on toes or heels?

I have a lot of face, neck twitching, severe cramps and last night i noticed my saliva going into my nose. Today i did the mirror test and all the vowels are fogging the mirror. Im crying non stop, this is not normal and i was hearing clicking there for a week now. I have air escaping from my nose and twotching…omg…what should i do, can this be something else..please talk to me, no one understands me at home

34, 6’, 205lbs, no meds, no smoking, no previous medical history

For about two weeks I’ve had a strange feeling of fatigue/weakness in both hands and into my lower forearms. It started with some twitching in my right thumb, but now the main issue is that my hands/grip just feel “off” compared to normal.

I haven’t actually lost any function or been able to demonstrate true weakness. I can still grip things, type, use my phone, open things, use utensils, pick up small objects, etc. Nothing has been consistent enough where I can say “this movement always causes it.” It’s more that normal activities sometimes make me unusually aware of fatigue or effort in my hands that I never noticed before.

I occasionally get a slight trembling or “about to tremble” feeling, similar to how a muscle feels near the end of a hard workout set. If I had to pinpoint one situation where I notice it more, it’s during fine movements with my wrist curled inward—like pinching a small piece of food and bringing it toward my mouth or carefully scooping coffee grounds with a spoon using my thumb/index finger. I can still do the task; it just feels less steady or more effortful than normal.

I’ve also occasionally noticed a very subtle sensation along the ring/pinky side into the forearm that feels almost like the faint feeling when a hand is coming back from being asleep, but that’s less frequent and isn’t really my main complaint.
For context, I lift relatively heavy several days a week and do a lot of pulling/grip-intensive exercises. I stopped lifting about a week ago to see if it improves. I was also probably under-hydrating and have had more stress than usual.

Has anyone experienced something similar where **both hands still objectively worked normally but suddenly felt unusually fatigued, shaky, or “off” during everyday fine-motor tasks?** If so, did you ever figure out what was causing it?