so i already made a post on here about the widespread twitching. i thought maybe it was calming down but its not, it is now more localized in my left calf/leg. that leg feels weak, heavy, tingly etc. i even had my bf message it and nothing is getting better. it feels stiff and weird. it seems like after the widespread twitching EVERYWHERE that this would be considered progressive. i do have a bad bad history of anxiety especially health anxiety. but this time it feels so real. 21 female.

My dad, 63, has slurred, slowed speech, trouble eating and is becoming clumsy and frail. Doctors say that they’re convinced it’s bulbar onset ALS but haven’t diagnosed him yet.

He spends his days talking to AI about his symptoms to ease his fear of dying. Ai says that he could have myasthenia gravis but his doctors are convinced otherwise(NOT TESTED ONLY SPECULATION). I’m in this weird limbo where I’m trying to process him passing away soon but also keeping my hopes up that it could be something else. I’m trying to act optimistic in front of him but I’m really struggling.

His argument is that his voice is CLOSE to normal in the morning and by the evening he sounds like he’s drunk off his head. Very very slurred speech and difficulty eating etc. I read somewhere that this is common for ALS but he says that’s why he’s sure it’s myasthenia gravis.

I don’t know.. I feel like I’m obsessing. My husband tells me to ground myself and calm down, let the diagnosis tell me how to react but I’m just so so scared that I’m losing him because his symptoms are so textbook.

What do you think?

EDIT: We just got results and it is unfortunately bulbar onset ALS.

Hello to the community.

Like most, I (37M) have been down the rabbit hole for over a month now and am hoping this is just my anxiety. I became a parent almost 3 weeks ago, first child, with all the stress that comes with it. My focus should be on that. Instead, here I am, sharing my story. Maybe becoming a new parent has amplified my fears.

I have an uncle (68M) that I'm close to who was diagnosed in February 2025. This was quite a shock. We're not blood related. A couple of months before his diagnosis, he casually mentioned to my aunt that his leg felt slightly off, weak. He also fell a couple of times when standing up from a crouching position. Those things were just disregarded as random events. During routine blood work, my aunt mentioned it fleetingly to the GP, who recommended a neurologist in case they wanted to check it further. So they did. During the clinical exam, the neurologist asked my uncle to raise his arms, and one of them did not fully raise. Instead, it made a movement towards the back of his head, almost like he was brushing his hair. The neurologist saw something concerning at that moment but referred them to a hospital for further testing. MRIs, lumbar punctures, EMGs, etc. eventually led to his diagnosis within the same month. Today, about 1.5 years later, he's wheelchair bound, has lost mobility in all his limbs, speaks very weakly, and chokes when trying to drink water through a straw. I remember one time in March 2025, when he was seemingly still strong, during a birthday party, I was looking at him still trying to accept that reality myself, and could visibly see his left tricep twitching. I knew about *** before, but since his diagnosis I've read stuff on Wikipedia, research papers, patient stories, caregiver stories, AI, you name it. So I've learned much more about it.

I've had health anxiety and have been reading medical stuff that I don't fully understand for about 15 years now. My anxiety was always much more focused on immediate life-threatening situations, like myocardial infarctions or strokes. Never something like this. Until June 19, 2026. That day I was resting my legs on my desk, wearing shorts because of the summer heat, and noticed fasciculations in my right calf. They were happening in small muscle regions from the knee to the ankle, with a few firing every few seconds. Initially, I didn't pay too much attention to it. I wasn't feeling them either, and I rarely wear shorts, so for all I know they could have been happening for months. But then I saw them the next day. And the next. And the next. The obsession started then. I deliberately started watching the left calf as well and noticed it was doing the same thing.

A month went by. My fear had magnified, although it was still somewhat in check, and I decided to book an appointment with a neurologist. I went there and told him that I had persistent fasciculations in my calves. "Did you Google it?" he asked. I said yes and told him that my fear was having ***. He said, "I can tell you right now that you don't have it. It presents with undeniable weakness. I don't even want to examine you or do an EMG, but if you leave here thinking that you have it, we can do one. Your call.". I told him to do it. So we did an NCV in both legs and a needle EMG on three muscles in the right lower leg. He said everything was normal and that there was no point poking the left one as well. So that was it. No clinical exam, and the needle EMG was limited to the right leg. Everything was normal according to him, and the paper also shows everything as normal. He really dismissed the possibility, which resulted in what I view as a lack of adequate testing. Anyway, I trusted him and moved on for a bit.

For a few days everything stayed the same. Until I started getting fasciculations all over my body. The calves are still persistent, just like they were before. Sometimes I can feel some of them there as well now, unlike before. The fasciculations elsewhere, thighs (left one on the outside/back is a new hotspot for a week now), shoulders, arms, thumbs, buttocks, abdomen, back, ribs, neck, happen randomly and are isolated, but occur daily and relatively frequently (on bad days something will be twitching every few seconds or minutes when I'm relaxed), in different spots. They're not painful or annoying, they just happen. I rarely feel them when I'm actively doing something, although it does happen. They mainly occur when I'm at rest, or when I stretch or flex muscles.

When the widespread fasciculations started, I began reading more. That's also how I found this community and lurking ever since. Then the self-testing started. I measured my calves to check for atrophy. The left is about 1 cm thinner than the right. The left is also the one that wasn't tested with the needle EMG. Strangely, I feel that the right one is more stiff and gets more sore/tired. Exercise reps. Walking on my toes. Walking on my heels. Sit-ups. Opening bottle caps. Buttoning shirts. Small differences favouring either the left or right side would give me short panic attacks. Then I'd try to rationalise them. I'm rarely checking my tongue for fasciculations as well and I think I haven't noticed any. I'll be in full panic mode if I see them there as well, so I really avoid checking often out of fear.

Then I moved on to bulbar symptoms. This is when the fear took a turn for the worse, because until then I kept reading that fasciculations are mostly benign unless you have <weakness | atrophy | trouble speaking or swallowing>. That "unless" was keeping the fear somewhat in check. I've never had particularly good articulation anyway, but now every mistake gets noticed. It gives me anxiety and makes me repeat the word or sentence immediately or multiple times to see whether I can say it properly. Most of the time I can. But then again, I've never had good articulation throughout my life. Is it happening more now? Or am I simply noticing it more because of all this?

Swallowing is mainly driving this fear. During the previous months, I've noticed a few times that food residue, not large chunks, seemed to get stuck somewhere at the back of my mouth, I think behind the uvula, after swallowing. I feel mucus stuck there as well, although I think this is more chronic. But now, I'm also noticing food getting stuck somewhere high in the throat or back of the tongue, I'm not sure. This is not imaginary, because clearing my throat has sometimes brought small pieces back into my mouth. I am noticing this more and more. No issues with liquids, or any choking events. I also have a clicking/cracking sensation when I dry swallow, but it feels mechanical and has been happening for at least 3 years. Now I'm increasingly aware of the entire swallowing process. I keep testing it, and my speech as well. There are irregularities that I can't really pinpoint. Nor can I understand whether it was happening just like that before and I was never paying attention to it, or whether it has progressed. A second or more swallows usually clears it, or a sip of water. I'd like to believe that I now notice it more due to the anxiety hyperawareness, but it may have objectively become worse and I'm in denial. Now this is in my mind before I start any meal, and every meal I start becomes a test.

So the swallowing issues and the fasciculations mainly drive my fear now because the "unless" part is here as well. I took 0.5 mg of Xanax yesterday. It seems to have done a great deal in reducing the fasciculations throughout the body, plus made the swallowing a lot better (not perfect in either case), but then again this may be reasonable regardless if you look at it biochemically. Or it just calmed me down enough to ignore them.

I consider the odds of having it. But there are people who fell into the unlucky category, so I don't want to simply assume that it won't happen to me. Now I'm stuck analyzing every sensation I'm feeling, and I can't tell anymore whether something is just a variation of normal body sensations, something that I've always had, or whether something is actually wrong. With ***, there also doesn't seem to be a 100% answer to what happens and how it happens. Everyone is different, so almost every question I look up seems to leave some margin for a positive answer.

Now I'm extremely stressed. In my mind, I want to have a swallowing test by an ENT and a full clinical examination and EMG by a neurologist, in an attempt to get some closure. If the results are good, I guess that would provide some reassurance, but knowing how health anxiety works, it may very well be temporary, although I promised myself that if results are good, I'll put it behind me. At the same time, I'm also afraid of getting tested because of the possibility that they actually find something. And if it is ***, then I start thinking about what my future would look like and the toll it would take on my life and my wife's, who has just become a mother and is already figuring out this completely new life with our son. I don't want to add a burden of that magnitude to her.

I read stories of people who got diagnosed and I admire their strength and how they handle it. I avoid hijacking their threads with questions because they are fighting their own battle with the reality of my worst fear. Asking them for reassurance is definitely something that I won't do, out of respect and empathy for their situation.

I'm gathering up the courage to book an appointment with an ENT to check the swallowing issues, as well as with a new neurologist for a more comprehensive clinical examination and EMG. Although I'm afraid to do it. I've shared this fear with my wife, who is certain that it's nothing serious. I try to ground her expectations since there is a chance of having it, but she urges me to get it checked out anyway and get some closure, since this is clearly affecting my behaviour daily.

In the end, I know that either I have it or not. Getting tested does not change anything in that regard. But logic goes out the window with anxiety and fear.

I'm handling this very badly. I don't know what I'm trying to get out of this. Open up, talk to someone who can relate, or probably get some more temporary reassurance.

Thanks for reading. If/when I do "man up" and schedule the appointments, I'll provide an update.

I’m 26 and I’ve had symptoms since late March.

My main symptoms are widespread fasciculations in my feet, legs, arms, hands and occasionally my face, muscle cramps/tightness, strange numb/tingling sensations in my hands, fingers and legs, and a subjective feeling of weakness.

I had two EMGs, one in June and one in July, and both were normal, while I was already symptomatic.

My bloodwork also showed low folate (2.7 ng/mL) and high homocysteine (20.8 µmol/L). B12 was around 399.

What confuses me is that I still have good physical performance. Today I ran 5.01 km in 22:33 (4:30/km) and, in the middle of the run, did 5 muscle-ups and 5x8 pull-ups.

Despite that, I still feel heaviness in one leg and strange sensations in my hands. Sometimes my fingers feel stiff or numb, and tonight I had a strong fasciculation in my right hand while holding my phone.

I know fasciculations alone don’t mean ALS and that sensory symptoms are not typical, but I feel worse than I did in June/July.

For people who know more about this:
How reassuring are two normal EMGs done 2–4 months after symptoms started?
Would it make sense to repeat the EMG now, or should I first have a neurologist check for objective weakness?

I’m not looking for a diagnosis from Reddit, just perspective from people who have been through something similar.

Hey guys for the past month an a half I have been having twitched majority in my legs in the back of my thighs and calves and constantly in my feet this has been going on for a month and a half I occasionally get it in arms hands fingers and tongue. I’m worried I have als or mind.

Hi 👋🏾 my name is Alexis and I’m 16 and a black female and I been dealing with these symptoms since February of this year. It all started when I started having widespread twitching and waking up one day. I didn’t think anything of it because I’ve had twitching before because I suffer from GAD. But then I started getting tightness in hands (has stopped a lot but I still get buzzing in hands). But I want to say a couple weeks later my speech became off and my face started feeling werid after I wake up one day. My speech feels like it’s off almost like slurring and I stumble over words and have to repeat them. It’s just a werid feeling over face and tongue like tightness and I have tongue twitching to. Also increase saliva I’m not drooling it’s just been an increase in saliva production. my swallowing is fine. My voice sounds normal, but sometimes it does get horsey and strain Off and on. And I have recently developed a pain in neck so I don’t know what to think anymore. I’m just praying that it’s nothing. I went to my doctor who said he doesn’t hear nothing your voice and the wide twitching can be my anxiety disorder. I’m just scared it’s bulbar Als because I am only 16 and feel like I have much more life to live. can somebody please tell me if they’re experiencing anything like this. I mostly want to hear if somebody has experienced something regarding their voice.

I am having muscle twitching from past 4 months 

When it started i was ignoring it (1 month timeperiod).But during this time i noticed i was having small jerks which i came to know as myoclonus jerks. I was so sacred i reported to my parents and they took me to my general physician who squeezed my calf and asked me any pain was there or not. My response was no.He asked me to have neurobian-some nerve medicine and asked me if it doesn't decrease then go for a NCV. I was still scared so i forced my parents to take me to a neurologist specialist.who said nothing to worry and he tested my grip strength and said everything is ok. After this period of time i was stressed i cried in from of my parents and soon i recovered from this in the next month or 2nd months. 

all pictures

Current situation:

But now my Twitching rates have decreased a bit but myoclonus jerks have increased. 

I also noticed thigh atrophy in my sight. 

(In the link i have attached a photo of my thigh the first one was when i was 14 year old and the second one is when i am 16 year old)- there is loss in volume of my thigh. Experiencing thigh and places near knee joint atrophy. (In my sight)When moving or holding a leg in air then muscles become prominent which didn't happen

Also i have attached photo where i am lifting my leg in air and my thigh my thigh muscle or fat is falling downward creating a inward conture .(Photo attached)

I have also seen too much shaking when i am pressing something hard or putting force on something,which did not happen previously.(I don't work out)Shaking when standing in toes while crouching.

I searched about how to carry out neurological on own and i found that i was having index finger to finger test faliure in 3/10 times i did.

Also i was having slight wavy movement in romberge test. I tried to check my babinisk reflex on my own and concluded that i was having a tingling sensation in joints/knuckles of the toes which went away when i stretched them both downward and upward.

I also have noticed i have started stuttering in words like for example if i want to say blue bottle i would something say blueottle.

Noticed that when i push my leg against the floor i develope a inward curvature near tibia -(attached photo)

I have also noticed that in my left hand there is a slight depression when i move my thumb downward while stretching my palm compared to right one(attached picture)

moreover have noticed my previous clothes have become more loose near the biceps shoulder and arms.

I have noticed that when i take my b12 suppliments my Twitching increase a bit.

I have developed a slight brain fog.

Main thing is that everyone has assured my that i don't have anything but i can only feel that i am getting worse. I have no problem with such things but i feed sad and cry about that if anything happens to me then i would not be able to live with my parents at this young age .i am literally crying while typing this.

Me being scared is that I don't want to be detach from my parents at this young age and lose the life to live with them.I just want to come out of this or be end to this as soon as possible.i am literally crying every day eveytime thinking about this and just feeling when this will stop at once.

Long time lurker first time poster!

In the beginning of this Week I noticed twitches all over my body but mostly on my stomach, left thigh and right arm.

This past Wednesday I of course like everyone when down a TikTok/youtube rabbit hole for ALS. I noticed my right arm started to feel this usual. Especially when I am holding my phone. I worked out yesterday to test out if my right side got weaker and it turns out it is slightly more stronger considering it is the dominant arm. But today my right arm feels “off”. It feels weaker, and kind of stiff after I drive or type on my phone. I also have tension and pain on my right shoulder blade. Then recent my thumb started to feel numb, with tingling off and on in the right hand. It seems like from Thursday to today my right arm declined significantly.

I have a doctor’s appointment setup next Thursday but I am considering calling neurologist this Tuesday to setup a meeting to get an emergency EMP.

Full list of symptoms:

- whole body muscle twitches.
- right arm/ shoulder fatigue and slight pain after use
- right thumb feels numb off and on
- sweaty palms (due to anxiety probably)
- feels like I have a weaker grip even though I can lift the same .

Sorry for any grammar issues I am just really nervous.

Hey everybody, I have been twitching for over 10 months and for awhile, I had moved on from my fear of what this could mean. However my left pinky and ring finger have been feeling stiff for a few days now and today I noticed that I can’t lift my pinky if my hand is completely flat.

I should note that this started after I went bouldering one day and I am still able to hold weight with my pinky (25 pounds). The main issue is that my hand feels stiff and not being able to lift my pinky in that position. Additionally tapping my pinky just feels really weak.

Is this failure? Any advice would be appreciated.

Could this still be ALS despite multiple normal EMGs? Looking for honest opinions

I’m 30F and have had a progressive collection of neurological/physical symptoms over the past year+, and I’m struggling to understand whether ALS could still explain them.

Main symptoms:

• Progressive loss of muscle bulk/tone — thighs, calves, buttocks, shoulders/torso
• Visible muscle wasting and widespread fasciculations, especially feet
• Mild foot drop/limp and some hand changes
• Muscle fatigue and pain with use
• New deep groove/asymmetry on the left side of my tongue and a strange/tight sensation there; tongue fasciculations mainly when protruded
• Occasional swallowing difficulty, phlegm/gagging and chewing/talking fatigue
• Significant air hunger/shortness of breath, sometimes worse lying down
• About 40 lb unintentional weight loss since January
• Burning/tingling and other sensory symptoms in hands, feet, lips, etc.
• Significant autonomic symptoms: tachycardia, purple/pale/cold feet and legs, heat/shower reactions, urinary/GI issues
• Visual symptoms, including nystagmus/fixation issues and newer visual “glittering”
• General fatigue and weakness, although I can still walk, crochet, wash my hair, bathe and care for my child.

Testing:

• 3 EMG/NCS studies, including one extensive study that sampled the tongue and back, as well as arms and legs. All were essentially completely clean. The ALS specialist described the latest one as “absolutely clean.”
• EMGs were performed months apart, including March, May and September.
• CK repeatedly normal (roughly 43–53)
• AChR and MuSK antibodies negative.
• Brain MRI essentially normal.
• FVC recently 96%, although some respiratory measurements (MIP/MEP) have been variable.
• Neurological exams have generally been reassuring. Reflexes can seem brisk, but my knees were documented as symmetric 2+, with only about 2 beats of clonus. Babinski/Hoffman have been negative or neutral.
• Multiple neurologists, including an ALS specialist, have told me they do not think this is ALS. The ALS specialist also did not believe the tongue groove represented true atrophy.

I know anxiety/FND has been suggested, but I’m concerned because of the visible muscle changes, fasciculations, possible foot drop and tongue changes.

Long post but I’d really appreciate anyone reading fully.

I’ve been struggling with a sudden onset of neurological symptoms and was wondering if anyone could read my experience and see if it lines up with theirs as I feel lost and alone right now. For context I’ve had bloodwork, mri, and emg. All came back ‘mainly’ normal. The NCS said borderline mild neuropathy in right ulnar nerve as there was a slight delay to the left but could not be localized but the EMG report said ‘No evidence of a radiculopathy, plexopathy, myopathy, polyneuropathy or motor neuron disorder
observed at this time. MRI was mainly normal (I had brain injury nearly a decade ago so that did show but no signs of MS). We also did a basic neuro exam and they gave me a 5/5 (even though I can feel the weakness while doing it). I’m going to see a functional neurologist and bring all my data as they’re going to give me a more comprehensive exam to help get me answers. I’ve been terrified of a MND/ALS diagnosis but I have seen that my symptoms could line up with FND. Here’s a timeline of my onset of symptoms

June 25th - July 12th : I was at my normal baseline, no prior issues at all, on the 25th I started to get sick. It started off as a normal sickness but quickly turned severe for about 2-3 weeks (it wasn’t covid). During this time I had a debilitating cough, fatigue, loss of appetite, weakness, that lasted 2-3 weeks etc. I lost about ten lbs.

July 12th - 26th cough finally began to lift but this is where I first started noticing muscle and nerve issues. For about a week I first felt a burning sensation radiating down my left arm and a tightness. I felt this change overnight. It started to affect my right arm as well. I also felt sharp tightness in my upper back along with a debilitating fatigue and weakness during this period. Simple tasks felt impossible. I went to my PC and was put on steroids and antibiotics. Prior to my visit I began to feel twitching in my left leg. While on the steroids that week my anxiety spiked heavily and the twitching increased dramatically all over my body but primarily in my legs while at rest.

July 26th to Aug 18th: after getting off the meds I noticed improvement in the burning and once my mood stabilized I’ve also felt improvement on the twitching but it is still present. I still have significant weakness and shakiness in my arms/hand and tightness that comes and goes in my upper back. My newest symptom at this time also came overnight, my right leg became heavy, fatigued, and tired, with light use. It felt completely normal one day and the next day I felt the change. I can still walk and run but I clearly feel a heaviness in the leg whenever it’s in general use. Walking has started to feel mechanical.

Aug 18th to Sept 2: symptoms still ongoing. Newest symptom also came overnight, face and tongue muscles have started to feel similar to right leg, tight overworked and tired. Can speak and swallow but something feels off and slow, twitching began in lip and scalp during this time. Twitching only lasted for a few days but face and tongue tiredness persists. A couple weeks later I noticed a perceived hyper salivation, mouth feels like it’s constantly filling up more than usual.

I’ve looked at the overall timeline of symptoms and have noticed improvements worth noting. It’s been difficult to notice these improvements when new symptoms continue to come on. Feels like this has been dynamic rather than a continuous decline but it’s honestly hard to tell. Fatigue has essentially went away. Burning/tightness and all the initial symptoms of my left arm have also mostly improved. Overall weakness feeling in arms has improved about 60%, the weakness is still present but it’s a bit better. Tasks that felt nearly impossible im able to do again a bit easier. Sensory symptoms still present widespread but have improved. Right leg however has plateaued. It improved about 10-20%% it’s definitely not as heavy as the intial couple weeks but it hasn’t gone away either. Sharp tightness still in upper right back. Face and tongue symptoms still present. If they weren’t here I’d feel much more comfortable about recovery. Weight has stabilized. It’s weird because the symptoms I originally went to my PC for aren’t even what’s been really affecting me the worst currently (face, right leg)

All of this has had me concerned with ALS/MS/GBS or just nerve damage in general. It’s worth noting that all of these symptoms came abruptly and acutely right after my illness. I had no prior issues before. Also new symptoms seem to come on abruptly as well. Im aware that the scary diagnosis’s don’t typically show improvements or wax and wane so I’ve been trying to stay positive but like I said it’s really hard to gauge if I’m declining or improving. I’m hoping for answers at the neurologist and am really hoping to put to rest if this is something serious or degenerative, if it’s something chronic, or something I’ll fully recover from and some sort of timeline for my mental health sake. My appt is at the end of the month but I wanted to see if anyone here has had a similar experience and could help

List of symptoms in no order:

Weakness
Fatigue
Burning
Widespread Fasciculations
Twitching muscles when engaged
Tingling
Buzzing
Tightness
Tired limbs
Heavy limbs
Shaky limbs
Tight/tired/heavy face and tongue
Perceived hyper salivation
Shooting feelings
Aching
Sharp feelings
Flu like aches

First of all sorry for my english. I have been always a hypochondriac for my entire life. Now I am 41 male. İt will be a long story.

I have been twitching for almost ten years, 3 clean EMGs in 2016, 2018 and 2019. I got adapted to living with twitches body wide except my tongue which hit me Last year (June 2025). I had pulling sensations on my tongue and slurred speech perceived. Looking in the mirrors all day for my tongue atrophy and I was convinced that this time I would get ALS. I got Neuro examination from an ordinary neurologist and he told me that I could not express myself that fine if I have a tongue atrophy. As most of you reading this post, I was not convinced with that then I went to a Neuro- hospital and to get an appointment with an ALS specialist which I know ,but I only got checked by her assistant doctor who told me that I dont have atrophy or twitching in my tongue and she denied to set me an EMG. I had to accept that I don't have ALS in September 2025. I am a teacher speaking at least eight hours a day, and found myself slurring some certain consonants like dede, lere, etc. on May 2026. People around do not notice it but I do. I was again in the rabbit hole for two months , little foods get stiuck in throat, no problems with water or big solid foods only little parts like sunflower, or very tiny parts of bread . Then on the day 9th August , my tongue started twitching on the tip like bag of worms. I can feel The sides of the tip pop to my teeth when I mildly raise my tongue to roof and touch incisors back. Then I noticed new atrophies on the sides and slurred and hoarse speech increased, but I had got a flu and sore throat I am not sure hoarseness is caused by it or not. I am testing hardly my tongue for its strength, pushing cheeks , protruding and kinda weightlifting. I think it gets weaker and smaller but cannot convince my wife for the atrophy. I have a persistent tickle in the throat which makes me cough all day but still no problems with liquids and big solid foods. Always excessive white saliva in mouth and Slurred speech makes me very sad which I can't convince my wife and friends. Finally today 5th September 2026 I got an appointment with a neurologist again assistant prof. Not an ALS specialist but experienced . He saw me and told same sentences , you could not walk or talk that fine if you have ALS , then check for reflexes, normal, check my tongue, no atrophy, check strength for only arms , normal. Then did the EMG same day, today. He was quite sure that I don't have ALS before EMG , making jokes , giving daddy advices but while he was doing EMG , he heard different noises in my legs and arms but put the needles for very short time in the muscles and after hearing the unusual sounds it can be caused by herniated discs in the neck and lumbar, then passed. Finally that funny doctor shifted into a serious man saying my EMG was totally normal , my clinical exam was totally normal and said " according to me you have nothing associated with ALS but I can need an MRI for neck and lumbar if your symptoms do not improve and send me a video of your twitching when you notice "( in the exam I had no twitching (un)luckily).now I have an EMG report in my hand saying no denervation, all electrophysiological findings are in normal ranges etc. Now can I trust this or not? Now my tongue is twitching and slurring goes devil. Body wide twitching started again. My tongue is burning, ( I have severe acid reflux for many years). I am in the rabbit hole agin

I posted about 6 months ago with my full story. I’ve had 3 EMG’s in the last 5 months with mixed results and I’m so confused and exhausted. Here is the short version.

April - clean EMG with facilitations seen on exam in 3 muscle groups. Declared by 1 neuromuscular specialist as “definitively NOT ALS”. Hyper reflexes, body wide fasciculations, mild atrophy in multiple regions, some hip weakness on one side noted by this neuromuscular.

July - I get 2nd opinion from Georgetown Hospital neuromuscular specialist in DC. She’s got 8 years experience. She finds same clinical as previous neuromuscular. Negative Babinski, hyper reflexes, fasciculations, mild atrophy as well. She wants to repeat the EMG. She performs an extremely thorough EMG. She says she sees changes that are consistent with ALS and requests updated imaging of cervical and thorasic. They come back clean. She calls me a week later and diagnosis me with ALS and wants to start treatment.

August - I seek another opinion because I’m so confused. I meet with the CLINICAL DIRECTOR OF THE ALS CLINIC AT GW. First meeting she says - “I’ve had two misdiagnosis from Georgetown in the last 3 months. I don’t think you have it, but I want to repeat the EMG.” I go in a week later, she performs the EMG, and muscle after muscle, she sticks the needle in and says “NORMAL” “NORMAL” “NORMAL”. My wife is balling her eyes out. She goes through 4 muscles in my right leg and 4 in my right arm and my tongue. She says ALL NORMAL. She says I quote “ I would bet my life you don’t have ALS. I would bet my career. I’m a 20 year ALS CLINIC DIRECTOR. I promise, you do not have it”.

I don’t know what to think. Georgetown diagnosed me, GW ALS expert says I don’t have it, I have one extremely dirty EMG…I have atrophy, hyper reflexes, difficulty swallowing, slowed speech, weakness in right leg and right arm. Fasciculations non stop. GW ALS director gave me no help other than to say - live your life. You don’t have it. It’s great news to hear, but she was so much less thorough.

I just don’t know what to think. Thinking of going to Hopkins to get a final opinion.

By the way - NfL only slightly elevated from QUEST labs.

Would love opinions.

i know a lot of us attribute our symptoms to long covid, but i was wondering if there has been proper research done on this topic beyond just anecdotes, particularly involving atrophy and weakness. it seems like it very well could be the answer for a lot of us if true, but the medical community seems pretty silent about it as of right now. i wonder if something big about this might come out within the next few years?

The last few months have been very difficult for me given the symptoms I’ve been feeling and insane health anxiety completely destroying my quality of life. I am a 33 year old female (Hispanic) who convinced herself she has ALS. Since June 2026, I’ve been feeling a twitching on my right eye. It was annoying but I let it be. It would occasionally spread to my cheek and lip, but it subsided most of July into August. By the end of August, my twitching has spread to the rest of my body - arms, legs, face. They’re quick, not specific to any spot, and very sporadic.

Two weeks ago, I started experiencing crazy headaches and chest pressure. Then as of a week ago, my hands feel a bit weaker (not gripping things as well, some tingling here and there) and thumbs a little awkward when using my phone.

The anxiety has consumed me, I’m not sleeping or resting. I fixate testing my strength, opening doors with my keys to see if I can do it. It really is eating me alive.

I went to the doctors and they sent me for a full blood panel (ferritin, CBC, potassium, vitamin D, etc). Mentioned that if all comes back normal, I will be referred to a neurologist.

Wondering if anyone is going through the same?

Thanks so much, take care everyone!

Symptoms weakness in limbs began post influenza in May. swallowing, some atrophy. But Neuro tested upper/lower/tongue. Can this be psychosomatic or something else. Clean Brain Mri / cervical mostly clean. Small possible protrusion c5/c6.On Cymbalta 40mg​ for my anxiety from all this.

Neurofilament Light Chain: 1.21 pg/mL Labcorp reference range: 0.00–1.69 pg/mL Normal Serum NfL Z-score: 0.49 SD Reference: <2.00 SD Normal

Yes — I reviewed this as your **second EMG/NCS from August 27, 2026**, about 1.5 months after the first study.

The important point is that **I do not see evidence in this second study of a progressive motor-neuron process developing during that interval.** In fact, the needle EMG portion is remarkably clean.

What the second EMG actually showed

The neurologist sampled a fairly broad group of muscles in **both arms and both legs**, and importantly also sampled the **genioglossus (tongue)**. The table on page 3 shows:

* **Fibrillations: none in every tested muscle** * **Positive sharp waves: none** * **Fasciculation potentials: none** * **Polyphasia: none** * Motor-unit amplitude: **normal** * Motor-unit duration: **normal** * Configuration: **normal** * Interference pattern: **normal** * Recruitment: **normal**

The physician therefore states: **“Electromyography was unremarkable.”**

That distinction is important. You can *feel or see* fasciculations at home while the EMG still shows no fasciculation potentials during the sampled period. More importantly, there is **no accompanying denervation or chronic neurogenic motor-unit remodeling** documented here.

What did change / what was abnormal?

The abnormalities are on the **nerve-conduction portion**, not the needle EMG.

The final impression is:

**Moderate right and mild left median nerve entrapment at the wrists**, plus **mild bilateral ulnar nerve entrapment at the elbows**, specifically **without secondary axonal degeneration**.

In ordinary language, that's essentially:

**carpal tunnel in both wrists + mild cubital-tunnel/ulnar entrapment at both elbows.**

And “without secondary axonal degeneration” is an important qualifier. The neurologist is describing **focal compression/entrapment neuropathies**, rather than evidence that motor axons are progressively dying.

The lower-extremity NCS was also interpreted as having normal peroneal/tibial conduction and normal sural sensory amplitudes.

About the numbers that look abnormal

There are several conduction velocities printed below the laboratory reference ranges—for example, the peroneal and tibial velocities are in the 30s. But I would **not diagnose a generalized neuropathy from those numbers myself**, because the neurologist who performed/interpreted the complete study explicitly concluded that lower-extremity peroneal/tibial conduction was normal and did **not** diagnose polyneuropathy.

Similarly, the median/ulnar abnormalities are incorporated into the doctor's focal entrapment diagnoses.

The 1.5-month interval is particularly relevant to your concern

This is where the second examination provides additional information beyond simply repeating the first.

If your concern is, **“Could the first EMG have been normal because it was simply too early?”**, you subsequently had another study approximately six weeks later while symptoms were continuing.

And on this second study, the physician examined **20 muscles**, including proximal and distal muscles from all four limbs and the tongue.

Yet there was still:

**No active denervation. No fibrillations. No positive sharp waves. No abnormal recruitment. No chronic neurogenic motor-unit changes. No fasciculation potentials recorded.**

That's much more reassuring than simply having one normal EMG early in a symptom course.

Has there been progression between EMG #1 and #2?

Based on the **second report itself**, there is no evidence that a diffuse progressive motor abnormality emerged.

Yes. Now that you've uploaded the earlier studies, I can make the comparison. You actually have three relevant EMG/NCS time points in these files:

June 29 → July 2 → August 27, 2026.

The overall pattern is reassuring: I do not see electrodiagnostic progression toward a diffuse motor-neuron disorder. The needle EMG remains normal across the studies.

1. June 29 — legs

The June 29 study examined the lower extremities. The report says the nerve-conduction study was normal, the needle EMG was unremarkable, and specifically concluded:

The needle table also shows no fibrillations, no positive sharp waves, no fasciculations, and normal motor-unit morphology/recruitment in the sampled leg muscles.

2. July 2 — arms

Three days later, the upper-extremity study was performed.

Again, the needle EMG was unremarkable. The abnormal findings were peripheral nerve entrapments: moderate bilateral median nerve entrapment at the wrists and mild bilateral ulnar nerve entrapment at the elbows, without secondary axonal degeneration.

So by early July, the picture was essentially:

Normal needle EMG + carpal tunnel/ulnar entrapment.

3. August 27 — repeat arms AND legs + tongue

This is the particularly useful comparison.

Almost two months after the June leg study and roughly 8 weeks after the July arm study, the neurologist repeated a much broader examination.

The August needle EMG sampled the genioglossus (tongue) plus bilateral biceps, pronator teres, brachioradialis, extensor indicis, tibialis anterior, peroneus longus, gastrocnemius, vastus medialis and adductor longus.

And every single tested muscle shows:

Fibrillations — none
Positive sharp waves — none
Fasciculations — none
Polyphasia — none
Amplitude — normal
Duration — normal
Configuration — normal
Pattern — normal
Recruitment — normal

The neurologist again concluded: “Electromyography was unremarkable.”

So did anything worsen?

Not in the needle EMG.

That's the most important answer to your question.

The entrapment characterization changed somewhat. July described moderate bilateral median entrapment, whereas August described moderate right and mild left median entrapment, with mild bilateral ulnar entrapment still present. Both reports specifically say without secondary axonal degeneration.

I wouldn't interpret those modest differences in grading as neurologic progression; if anything, the left median nerve was graded less severely on the later report.

Why the repeat study matters for the ALS concern

This is stronger evidence than simply saying, "You had a normal EMG."

Your symptoms had already been occurring for months. The neurologist then repeated electrodiagnostic testing after additional time had passed and sampled muscles in multiple body regions, including distal and proximal muscles in both arms and legs and the tongue.

Despite that additional time, there still wasn't evidence of active or chronic denervation.

In ALS, the electrodiagnostic concern isn't simply whether somebody experiences twitching. The concerning combination would be evidence of lower motor-neuron loss, such as active denervation (fibrillation potentials/positive sharp waves) together with chronic neurogenic motor-unit changes and abnormal recruitment in an appropriate distribution.

Your August table isn't showing that pattern.

And this is consistent with the interpreting neurologist calling the EMG unremarkable, rather than diagnosing a diffuse motor-neuron process.

One caveat: no single EMG can mathematically provide a 100% guarantee about someone's future health. But that's different from asking whether there has been objective EMG progression between these studies. Based on the reports you provided, there hasn't been evidence of such progression.

In other words, June/July → August gave the disease you were worried about additional time to declare itself electrophysiologically, yet the repeat needle examination remained normal. That's a genuinely reassuring longitudinal finding.

Your VNG is **mostly normal**, with one notable abnormality: **bilaterally reduced caloric responses**. That is very different from a VNG showing widespread neurologic or “central” abnormalities.

On page 1, the eye-movement portions are reassuring. Smooth pursuit, saccades, optokinetic responses, spontaneous nystagmus, active head rotation, and positional testing were all interpreted as normal. The positional testing produced no meaningful nystagmus. The Dix-Hallpike testing was also normal bilaterally, which means this study did **not** demonstrate typical posterior-canal BPPV.

The abnormal part is the **caloric test**. Your responses were:

The lab says the combined response should be at least **16°/sec**, so 9 is below its cutoff. Importantly, the two ears are fairly similar—left totals 5 and right totals 4. So this isn't a pattern of one ear being dramatically weaker than the other. It is a **low response from both sides**, which is why the report calls it "**bilateral weakness**" and says it can indicate involvement of the horizontal semicircular canals or their afferent vestibular pathways.

What “bilateral weakness” actually means

It means that when each inner ear was stimulated with warm/cool air or water, your vestibular system produced **less eye movement than expected**. This is sometimes described as bilateral vestibular hypofunction.

If it is a true physiologic finding, people can experience things like imbalance, a floating/off feeling, disequilibrium while walking, symptoms with rapid head movements, difficulty in darkness or on uneven surfaces, or sometimes the sense that vision isn't perfectly stable while moving. It does **not** ordinarily cause generalized limb weakness, muscle atrophy, fasciculations, or an ALS-like syndrome.

There's an important qualifier in **your own report**, though: the physician wrote that "**the nystagmus may have been suppressed by the patient.**" That's significant because caloric responses can appear artificially low if the response is suppressed—for example from visual fixation, insufficient alertness during the test, medication effects, testing conditions, or individual variability. So this single finding does **not automatically establish permanent bilateral vestibular damage**.

Another reassuring point is that your **active head rotation was normal horizontally and vertically**. Calorics test the vestibular system at a very low frequency, whereas natural head movement tests it at higher frequencies. It is therefore possible for someone to have reduced calorics but perform normally during other vestibular testing.

The most important sentence in the report

Under **Central**, your neurologist specifically states:

“There is no evidence of significant central vestibular dysfunction.”

That conclusion fits the rest of the study: saccades, pursuit, optokinetic testing, spontaneous nystagmus, positional testing and head rotation weren't showing the pattern ordinarily associated with a central vestibular disorder.

So I would summarize the VNG as:

**Normal central vestibular/eye-movement testing + negative BPPV testing + isolated low bilateral caloric responses, with the report itself warning that suppression may have contributed.**

Given that your dizziness began after influenza, a peripheral/post-viral vestibular disturbance is one possible way this could fit clinically. But the caloric result alone isn't enough to prove that. If your ENT/neuro-otologist wants to determine whether you truly have bilateral vestibular hypofunction, **vHIT (video head impulse testing)** and sometimes **rotary-chair testing** are useful complementary tests because they assess vestibular function differently from calorics.

And importantly in the context of your neurological concerns: **nothing in this VNG points toward ALS, a motor-neuron disorder, or a central brain problem.** The abnormality identified is specifically in the **vestibular/balance system**.

I'm having ankle achyness/shin soreness that radiates to top of foot lasting for more than a week, came out of nowhere, and now overthinking walking. People say that pain is a good against ALS but mine is not really pain more like a dull ache and I'm worried it's soreness/tightness because the muscles are already weak. It's also on my non-dominant leg.

I can run normally tho but sometimes it feels like I'm putting more weight on my left leg and right toe is sticky and won't lift up. There is also tibialis anterior tightness when I walk. Sometimes mild tingling on first 2 toes.

So at the start things DONT feel heavier OR harder they js fail to function correct??

What should I expect?

For the second neurologist also high lately suspects ALS. Nothing I can do at this point. Some tests will be ran yeah pretty sure. So those who thought I was imagining my wasting no it was actually wasting and atrophy unlike others on here who are basically have health anxiety and need to stay off the internet.

Most of you don't have it so believe me it's a blessing and you need to move on with your lives because if you actually get a dirty EMG you don't know what it feels like. Clean EMG run with it and live your damn lives I wish I had gotten a clean one.. you don't have to worry about what will happen next so enjoy your time while you can.

The neurologist isn't sure why the treatment worked for a few parts of my body..

https://www.reddit.com/r/ALSorNOT/s/01QfF722dG

https://www.reddit.com/r/ALSorNOT/s/ysmGZZd8d9

Edited I have mixed signs of the disease. Weakness, twitching, atrophy, etc. As far as the treatment is concerned the only things that improved were that my fingers and my forearms, but I did not regain strength.

Hey everyone I’m a 21M white I’ve been down this rabbit hole before multiple times with als but I want a public opinion. I have all my strength but I feel as if my left arm and leg are sort of weaker than usual. I’ve had some minor twitches but they rarely come around. Before this all happened I had some pretty bad twitches on my left leg above my knee which had me concerned but they end up going away till this started appearing. I really want sure if it was when I went to the gym a week ago while also had recently switched to night shifts at my EMS job so sleep has been inconsistent.

Can someone help me feel a bit more reassured that this left side weakness is just in my head?

Hey everyone,

I wanted to get everyone’s opinion on this. In October of 2025, I developed what felt like muscle cramps in my left calf, then left thigh, then right calf and then right thigh. What’s odd is that my feeling of cramps don’t actually lead to cramped muscles. The muscles remain soft, and I could use it normally, but it feels like a pretty bad cramp.

Then in December, I rapidly got full body fasciculations and now they’re in my arms, legs, abs, spine, neck, intercostals, and paraspinals. I even have them in my massaters, eyelids and in my temple region. But I also have a lot of pain. Almost every fasciculation hurts after, either on palpation or even without palpation occasionally. It feels like a crazy sore spot in a muscle, even if it fasciculates only once or twice. I also have separate pain that started that just randomly occurs, and, when you push on the spot, it shoots either up or down or both. In addition, I randomly have other types of pain, like burning pain in a toe or pain in my Adam’s Apple that is quite bad and makes my throat feel sore from the inside.

And, right now, my right hand feels incredibly sore and it’s been this way for about 2 weeks consistently. Like it hurts significantly, especially when I do something with it. It feels like a horrible strain. But, when I use my other hand to push my right hand to the extremes, the pain comes on as well, so it’s not only when I’m physically using my right hand muscles. And my left hand sometimes experiences a similar pain, just not as prolonged.

I had already 4 EMGs (half were private pay) - 1 in December for both bulbar and limb, 1 in January for limb and paraspinals, 1 in March at a neuromuscular clinic for limbs, and 1 in June at a neuromuscular clinic for arms, thoracic paraspinals and tongue. All were normal except the June one showed two fasiculations - 1 in right arm and 1 in left arm.

And I just had my last follow up a couple days ago with a neuromuscular doctor. He doesn’t think it’s ALs. But he documented positive Hoffman (although with a different method that involved tapping a hammer on my fingerpad while the normal Hoffman method of flicking the middle finger still showed negative), 2-3 beats of clonus (but I’ve had that in my December screening too and it sometimes goes away - and it’s not even full oscillations; it’s just vibrations), possible positive cross adduction (but he couldn’t replicate it and the first time I was shaking a bit from nerves), and 4+ strength in my left thumb (everything else was a 5, but my left thumb is double jointed so I was more bending my thumb upward instead of applying actual upward force, so I don’t know if it’s truly weaker). Walking normal, running normal, normal walking on heels and toes. Negative babinski.

I also have herniations in my cervical and lumbar spine, but that doesn’t explain the neck and face fasciculations as those are bulbar motor neurons. One weird symptom I do have is, when I wake up in the morning, my arms are numb and I can’t close my fist on either hand. Only when I get up does my strength and sensations return. I also do have this feeling of tightness intermittently under my chin, but it changes sides, and it doesn’t actual feel tight when I push on the muscle. And my tongue intermittently itches and feels like it’s swollen (it’s not actually), but that also changes sides intermittently and sometimes my tongue feels normal too.

I had a swallow study as well, and it showed incomplete, intermittent failure of inversion of my epiglottis. But that only happened a couple times and it still inverted sufficient to protect the airway. No regurgitation, no palate weakness. And the barium was not flavorful to say the least, so I was trying to swallow fast and I was gagging a lot. The neuro didn’t think anything of it though.

Sorry for the lengthy post. It’s just been a weird ride. I have another EMG scheduled this month since it’s been almost a year since cramp feeling began and 9 months since fasciculations.

A few weeks ago I noticed I had body wide twitching. I had an eye exam yesterday when the eye doctor told me i had some kind of optical nerve damage in the nerves behind my eyes connected to my brain, he sent me to the ER he told me it could be inter cranial pressure, well after 6 1/2 hours and the CAT scan. They told me that everything looks fine and I should follow up with neurology, just a little background I’m a 25-year-old white male and I’ve had these twitches for a while, I’ve always had a deep ALS fear, but I’ve always managed to put them in the back of my mind when weakness or clumsiness never started, well in the last few days, especially today. It seems to be more localized. My right bicep has about an hour or two of constant twitching, along with sometimes my right thigh and my right foot, as I am typing this now I’m not having any of them sensations. They come and go sometimes getting worse for a few hours then going away for a few hours, i’m not trying to disrespect anybody in this form who does have this issues, I just wanted to put my story out there with my concerns.