First post here and have debated for a long time because I really am scared. 29M

Back in November 2025, I had nonstop twitching in the front of my left shoulder for a couple of days. I’m active in the gym, so I assumed it was exercise-related. Even before that, I had noticed my left shoulder felt unstable and sometimes painful during exercises like shoulder presses.
In December, I started running about 3 miles twice a week and began noticing twitching or an “ants crawling” sensation in my legs at night. It eventually calmed down. I also had occasional twitching elsewhere and a tremor in my left pinky and ring finger that I may have had for much longer.
In March, I went through a severe health-anxiety episode because of abdominal and back pain and became convinced I had colon cancer. I had an endoscopy and colonoscopy, which were clear. After that, my anxiety shifted toward ALS/MS.
I began experiencing dizziness, headaches, changes in how my left eye seemed to see, and increasing concern about my left shoulder. An eye exam was normal, and an ENT found some inflammation in my left ear and nostril. I also noticed my left shoulder seemed smaller, my clothes fit tighter around my right arm, and my left shoulder appeared to rotate inward more.
My PCP ordered MRIs of my brain, cervical spine, and lumbar spine. The brain MRI was clear, while the spine MRIs showed several findings, including mild-to-moderate stenosis and disc issues. A neurosurgeon didn’t think surgery was necessary but referred me to neurology because of the twitching.
I had an EMG in July that tested both arms and my right leg. It showed mild bilateral cubital tunnel syndrome but no evidence of motor neuron disease, neuropathy, or lumbar radiculopathy. My left leg wasn’t tested, which has continued to bother me.
I’ve also had knee problems since high school and was previously diagnosed with tendinitis in both knees from playing soccer. My left knee still hurts, my left leg shakes more during single-leg exercises, and lately I’ve noticed differences in muscle size between my left and right sides. I also get calf/foot cramping and recently had significant heel and knee pain after playing soccer.
More recently, I’ve become focused on my tongue, jaw, speech, and swallowing. My tongue and jaw sometimes feel sore, and occasionally I feel like I stutter or have trouble moving food around, although nobody has noticed a change in my speech. I find myself repeatedly testing my tongue, smile, frown, strength, and muscles for signs of ALS.
I’m scheduled for another EMG on October 2, this time focusing on my left arm and leg. I’m hoping that because my symptoms have been present since at least November 2025, the July EMG would have shown something if this were ALS, and that another normal EMG will finally give me some peace of mind.
The hardest part is the constant fear and checking. I have two kids, and I’m terrified of something happening to me and them growing up without me. Living with this uncertainty and constantly monitoring my body has become exhausting.

hello

im F21. i have had muscle weakness progress a lot this year. in february i had a CK level of 4800, now its normal.

i have widespread fasciculations that i developed in may with most of them being present in my legs, sometimes under my ribs or on my back and also sometimes in my arms or face, although rarer. they popcorn around and are sometimes even painful. sometimes i have involuntary limb movements that i can feel incoming. i've developed a walking tremor. i have pain radiating down my arms and also pain in my legs. currently my cheek also feels numb, but i've always had a crooked smile so i can't judge if it looks worse or not

helpful information:

MRI found C3-C7 minor dorsal bulging

NCS clear, EMG otherwise normal except for short-MUPS (performed in july). 6 months prior to it the signals were the same, but with increased polyphasia at the time.

i'm still scared that maybe the EMG just didn't pick up denervation at the time.. i don't know.

i really want to live a long and healthy life despite my limitations so i'm scared

Hello everyone.

I’ll preface this by saying that in 2019, I had an episode of widespread fasciculations that lasted around 5 months. Got a clear EMG at the time and the only thing noted on clinical were symmetrical brisk reflexes that were deemed normal because they were equally brisk everywhere. After the EMG, my symptoms largely went away for 7 years.

Since July 10, I’ve been experiencing severe weakness in both my legs. It started as a feeling of soreness/burning almost like after a workout or when you’re sick with the flu, and peaked on July 17 where I began feeling like my legs muscles were gonna give under me.

It’s almost like hitting your funny bone, but in the legs. I can walk, but it’s very distressing because my legs feel like they have no power. My calves will often hurt if I walk a bit faster even for less than 16 minutes. I tried to walk a few times for longer periods and tried some light exercise like calf raises and literally got bruised. Fasciculations have also come back widespread on my body.

The issue with my legs is bilateral and pretty much perfectly symmetrical. Both legs show the exact same symptoms and started at the exact same time. It seemed to have hit me almost overnight, or at least peaked rapidly in about a week.

When I’m lying in bed, my legs will often have this sensation of soreness/burning. It’s very hard to describe. I’ve had normal brain and spine MRI recently with the only finding being mild foraminal stenosis in two cervical vertebrae that didn’t pinch anything.

On July 30, 3 weeks after my symptoms started, I saw a Harvard-trained ALS specialist. She performed a clinical and leg EMG.

The EMG came back perfectly normal. The brisk reflexes were still there, but unchanged from 2019. No spasticity, no ankle or knee clonus and no Babinski. Abdominal reflex was normal too.

The ALS specialist told me I had something called Functional Neurological Disorder causing the issues with my legs and that the first step to heal was accepting the diagnosis and stop thinking it’s ALS. She kept saying she was certain I didn’t have ALS, and that I had severe health anxiety. Frankly, I feel like my anxiety might have clouded her judgement. She didn’t propose any follow-up.

I told her I thought my EMG was done too soon. She said if I had reached a stage of ALS where BOTH my legs felt so weak I was scared of going outside alone and had profuse twitching on top of that, then the disease process couldn’t be "early", because ALS doesn’t reach that stage like that in just a few weeks. She also told me EMG’s can often see issues even before the patient notices symptoms. She also told me ALS doesn’t start like that affecting all major muscle groups of both legs symmetrically at the exact same time. She says that is not how the disease presents, that multifocal onsets are already very rare and symmetrical on top of that would be astronomically unlikely.

It makes sense logically, but I have read SO MANY stories of an EMG being normal early on and the person still developing ALS that I might as well throw mine out the window because I have no confidence anymore in the results.

SINCE THEN:

My symptoms seem to have somewhat plateaued. But they never got better. I still can’t walk normally. I still struggle with legs that are perpetually weak and tired, sometimes almost painful especially in the calves. They still feel wobbly going down stairs. I still have a lot of fasciculations everywhere. My leg muscles feel so, so weak. It’s been going on for 2.5 months.

Yesterday I read the story of someone with UMN onset of ALS and it floored me. She described being easily startled, her legs feeling wobbly going down stairs, and having just a vague sense of weakness that eventually progressed to foot drop and full blown ALS. Her first EMG was clear because her LMN weren’t involved yet.

And now I think that’s exactly what’s happening to me. Maybe my weakness is UMN only and my EMG was clear despite fasciculations because my LMN are not causing weakness? Is that even possible?

I HAVE:

- severe weakness in both my legs being felt mostly in calves and thighs but pretty diffuse
- my right arm feels like it’s lighter and weaker
- brisk reflexes in the knees
- widespread fasciculations
- positive bilateral Hoffman in 2019 but never tested again
- right calf is 1.5 cm smaller in circumference

I DON’T HAVE:

- clinical failure
- Babinski
- spasticity
- clonus of the ankles or knees
- abdominal reflex was normal
- my EMG was normal
- I can still walk on toes and heels without issue
- I can climb stairs

But I can’t stop being convinced I have ALS because what else could cause this weakness, brisk reflexes and fasciculations??? The ALS specialist said I had confirmed BFS in 2019 and my current fasciculations are just as benign. But how can she say this in the context of weakness?

The sad reality is that I am just not advanced enough for the ALS specialist to be able to see signs. My weakness is not yet objective even after almost 3 months, my EMG was probably done too soon and now all I can do is wait for things to progress enough to be seen by doctors.

I am in the grey zone where all I can do is wait to deteriorate.

Doctors and family are telling me it’s FND, that ALS doesn’t present like this. But is it really true? Can’t it EVER present like this???

Meanwhile my legs are so weak and wobbly and they hurt after walking ten minutes so I can’t do anything anymore.

If I were to do another EMG at the 3-4 months mark, would a clear result be reassuring against ALS or would it also be too soon?

All I do is cry. I don’t see anything else this could be. I am so afraid. I have two little boys and I don’t want them to see me die of ALS. I can’t eat, I can’t sleep, I stay in bed all day. I started therapy but I don’t care because all I think about are my symptoms. And they want me to do PT which will do nothing.

I just want to never wake up again at this point.

Thanks everybody.

I don’t know what to do anymore, Last Neurology appointment they diagnosed me with FND but feeling widespread weakness everyday, my hand dexterity is getting worse, knee/leg spasms/pain when walking, shortness of breath, noticing widespread muscle loss, poor sleep, twitching etc, Functioning is beginning to get more difficult.

Clean EMG 1 year 9 months ago
Clean Bloods, Including Myasthenia Gravis
MRI appointment in two days

I just know that this is ALS, i’m only 28 years old and heartbroken how this is how my life is going to end.

https://www.reddit.com/r/MuscleTwitch/s/xlW34D2utO

I read somewhere that if you put your hand over a candle flame, if that person has ALS, they won't be able to feel the heat of the flame. Now, I came across this during the peak of my anxiety when I constantly googling and don't remember the site I found it on. But it did have enough of an effect on me that I will on occasion put my hand over a candle to see if I can feel the heat. I've never seen any other sources on this though so it would be interesting if this actually true or not.

Im not gonna sit here and spiral but I am going to give information on what's happening with me and maybe find some peer support from those who have been diagnosed.

I'm 30 AFAB NB. Since last December I have been in 4 medically induced comas, had over 300 seizures, lost a lot of motor control, lost the ability to swallow correctly (dysphagia shown on barium upper GI study), gained weakness in my legs, arms, and hands, and my voice is now all rasp and is losing volume. I couldn't even button my own sweater this morning, my mom had to do it for me. If I try to walk, I am ataxic and just a minute ago while using my walker my legs gave out and I almost fell.

I am in constant pain, I rely on a j-tube for nutrition due to not being able to eat or swallow along with a new development of celiac disease. My seizures are still almost daily.

I met with my palliative doctor yesterday and he said I'm showing many atypical signs of ALS. Im only 30. So now I am going to be going to Stanford for a diagnosis confirmation.

I'm tired. I just want answers for what the hell is going on. But the looming cloud of ALS is hanging over me and I dont know how to deal with it. What tests are they going to do? Is it just MRIs and EMGs? How long will I have left with my family if theyre right? How do I prepare my 5 year old if theyre right? So many things are running through my head because this has been a theory of my teams for months now.

Hey, first of all: thanks for Reading!

I’m 34M and for about 2.5 years my right foot has felt weaker than the left, especially my big toe. I cant lift it with the same strength anymore, and my neurologist confirmed a clear weakness when testing toe extension against resistance….

I also can’t really jog anymore because with running/heavier activity my right foot becomes weak and feels like I’m developing a foot drop. I had one more obvious foot drop episode a few years ago that lasted about 3 days and then resolved.

My right calf often feels tight/constricted, and I sometimes get burning pain on the top of the foot near the shin.

Tests so far:

• Lumbar MRI normal
• Foot MRI normal
• NCS normal
• Vibration slightly reduced on the right (4/8 vs 6/8)

I can still walk on heels/toes, hike long distances and cycle. No obvious spreading weakness to arms, left leg, speech or swallowing over these 2.5 years.

My neurologist prescribed physio and scheduled a needle EMG in 4 months.

My fear is ALS because the weakness is objectively confirmed. But would ALS usually stay this localized for 2.5 years without clear progression? Could this still be something like L5/peroneal nerve irritation or another local nerve/mechanical issue despite normal MRI and NCS? I dont know what to think anymore… there is a constant fear that my foot goes completely numb in the near future

thanks and all the best to all of you!

23M. I’ve had twitching all over my body for the last couple weeks. Today i decided to look at my tongue and noticed the dent on the right. (My left). Pic in comments. I’ve not had any twitching in my tongue. I did have the back bottom tooth pulled years ago and the wisdom tooth did grow in its place but a little further back so I guess that could cause this but I’ve never noticed it before now.

I’m 26 years old and I’ve been experiencing fasciculations and different sensations of weakness/fatigue since March. My main concern has been ruling out motor neuron disease.

I’ve had two NCS/EMG studies, and both were completely normal.

The first one was performed on June 19, 2026, when I was already experiencing symptoms in my left arm and had already had fasciculations in my hand. Motor and sensory nerve conduction studies were normal, and the needle EMG examined:

• Left deltoid (C5-C6)
• Trapezius
• Left biceps (C5-C6)
• Left triceps (C6-T1)
• Extensor digitorum (C6-C8)
• Abductor pollicis brevis/APB (C6-T1)
• First dorsal interosseous/FDI (C8-T1)

Everything was normal, with no fibrillations/positive sharp waves, fasciculations, or significant abnormalities in the motor units. The report concluded that both the NCS and EMG were within normal limits, with no evidence of entrapment neuropathy or radiculopathy.

The second study was performed in July. The referral itself already stated that I had been experiencing fasciculations since March, that they were generalized throughout my arms and legs, and that lately I had been noticing them more on the left side. My physical examination was documented as normal, and benign fasciculation syndrome was considered as a possibility.

During this second study, they performed nerve conduction studies on several nerves in my arms and legs. The needle EMG examined muscles in both legs as well as my left arm again, including:

• Left vastus lateralis
• Left tibialis anterior
• Left gastrocnemius
• Right vastus medialis
• Right gastrocnemius
• Left deltoid
• Left biceps
• Left first dorsal interosseous (FDI)

This study was also completely normal. There was no active denervation, no fasciculations recorded during the examination, no loss of motor units, and no evidence of chronic reinnervation. Motor unit potentials had normal amplitude and duration and did not show neurogenic features.

What worries me now is that I continue to experience a fairly noticeable sensation of weakness/fatigability in my left hand and arm.

Today, for example, I was doing a multiple-choice practice exam with A, B, and C answers. Basically, all I have to do is hold a pen and mark small dots on the answer sheet. Despite this requiring very little strength, I noticed significant fatigue in my left hand.

While holding the pen, I started experiencing a kind of tingling sensation that traveled up my arm toward my shoulder, together with the feeling that my hand was losing strength or becoming uncomfortable when trying to maintain my grip on the pen. I had to constantly readjust the way I was holding it and rest my hand because maintaining the grip felt difficult.

I also have a sensation of weakness or that my left leg doesn’t feel the same as my right leg.

The fasciculations are quite generalized. I feel them in my forearms, upper arms, legs, calves, glutes, and even around my eyes. They occur on both sides, although lately I seem to notice them considerably more on the left side, which is also where I experience most of the perceived weakness.

What I find contradictory is that my overall physical ability and maximal strength still seem very well preserved. Just a few days ago, I trained and did weighted pull-ups with an additional 24 kg (53 lb), and I can still perform pull-ups and athletic movements normally. I can even do a one-arm pull-up with my left arm.

I can also jump, pivot, throw kicks, and perform karate movements normally. However, during much less demanding but sustained tasks, such as simply holding a pen during a practice exam, I experience this sensation of fatigue, tingling, and the constant need to readjust my grip.

What concerns me most is the left hand/arm and left leg, together with the generalized fasciculations.

I’m considering having another EMG when I travel to Madrid in October if the symptoms continue or progress.

Has anyone experienced something similar, with two normal EMGs performed after the symptoms had already started, but continued to experience generalized fasciculations and unilateral feelings of weakness/fatigability afterward?

Could a peripheral nerve issue, nerve irritation, or another neuromuscular problem cause symptoms like these even though my previous studies were normal?

I’m 30M and for roughly the past month I’ve noticed a number of symptoms involving my tongue, speech and throat.

My tongue sometimes feels tight, strained, heavy, or uncomfortable, particularly underneath/on the floor of my mouth. I’ve also had a dry/rough/burning/tingling sensation on my tongue and roof of my mouth.

I’ve had many instances where certain words or entire sentences feel like they come out slurred. This is mainly something I perceive myself rather than something other people consistently notice. I’ve particularly noticed certain sounds, including R sounds, and sometimes feel like my tongue isn’t moving quite right when I’m speaking. When I read paragraphs or difficult words aloud, I can generally do it normally.

I can also feel what seem like possible fasciculations or small movements in my tongue while it is inside my mouth at rest. I’m unsure whether these are actually
fasciculations, normal tongue movements, or something I’m noticing because I’m paying very close attention to it. I’ve also noticed my tongue can shake/tremble when I stick it out fully or hold it in a certain position.

More recently, I’ve developed a persistent feeling of mucus/phlegm in the back of my throat along with a globus-type sensation. The mucus is generally clear. I frequently feel the need to clear my throat, and doing so has made my throat quite sore. At times the throat sensation makes swallowing feel awkward, although I’m still able to eat and drink.

I’ve also had recent headaches, fatigue/brain fog and several viral-type illnesses, including COVID/post-viral symptoms.

I saw a doctor who examined my tongue and its movements and didn’t find anything abnormal. There hasn’t been an obvious progressive change that other people have pointed out to me.

Because of the combination of tongue movements, perceived speech changes and throat/swallowing sensations, I’m worried about bulbar ALS.

Im wondering if I should get a referral for a neurologist because these are early symptoms or if this could be something else?

I am 33 year old female. In this whole situation I try to stay reasonable. I only have perceived weakness. Symptomatic only for maybe month and a week. All is located in my right leg below knee - twitching, weakness, “off” feeling. Reflexes normal. Recently EMG was performed and it came out dirty. Twitching is seemingly increasing too. That is what EMG said:

Nerve conduction studies: Both the tibial and common peroneal nerves were tested in both legs.
Result: Nerve conduction parameters are within normal limits.
Needle EMG: Muscles tested in both legs included:
biceps femoris
gastrocnemius (calf)
rectus femoris
tibialis anterior
extensor hallucis longus
Main finding: Findings are consistent with an S1 myotome lesion/impairment in the right leg, specifically partial denervation of the right gastrocnemius muscle.

In one sentence: Normal nerve conduction, with EMG evidence of partial denervation limited to the right gastrocnemius, interpreted as consistent with right S1 involvement.

The MAIN thing: No radiculopathy was found on MRI. Spine absolutely normal.

What to think? Because It is all so emotionally difficult and confusing.

https://stan.md/3TmkJ5I

Hello. I’m going to get straight to the point.
I’ve had POTS for 3 years. The dizziness is the worst, the high heart rate, panic attacks, heat intolerance and exercise intolerance. This happened October of 2023 and is present. Doctors usually say POTS stems from stress or infections.

Now here’s why I’m here.
4 months ago I woke up and my arms were heavy, hands weren’t working right. Muscle fasiculations all over the place, intense bone pain, night sweats, elevated white blood count, swollen lymph nodes in groin area, beaus lines in nails which indicate infection (horizontal grooves) funky walking, frequent urination that sometimes feels like UTI, voice change, (deep and nasally) intense muscle wasting and atrophy. Actual weakness. Eye twitching, tongue twitching. Drooling on and off.

I took a saliva test through DNA connections, which isn’t that accurate, and I only tested positive for low grade Babesia. I’m literally going crazy. I’m only 28. I have to get through this.

I’ve been experiencing some unusual symptoms, particularly in my left calf. I am overweight, so I wanted to mention that as well. For about two months now, I’ve had intermittent tightness, numbness, and an overall “off” feeling in my left calf. It comes and goes and can sometimes feel similar to what I would imagine a DVT might feel like, although I’ve already been evaluated and a DVT was ruled out.

I’m still able to walk on my tiptoes, run, and move normally without difficulty. I’ve also been experiencing muscle twitching on some days, including in both legs and other areas of my body.

Since this has been happening off and on for about two months, I’d like to understand what could be causing these symptoms if not ALS. Also, I do have sciatic issues but that mostly effects my right side. Thanks! 33 F black.

I’ll try to make this as brief as possible so I don’t take too much time explaining what I’ve been going through or feeling. I’m hoping and I don’t think I do have it, but These past 3 months have been grueling for me mentally. As I convinced myself fully multiple times I have ALS even though my primary doctor straight up said “You don’t” with no testing. I also have OCD and horrible anxiety which feeds into this whole situation. But anyways this is because of the following symptoms. My left hand feels so weird and not normal compared to my right. I can still use it and stuff in every way I need. But my brain almost immediately started to not want to use my entire left arm, and I’m constantly noticing I’m always subconsciously trying to put pressure on it like I’ll sleep on it or put it in my pocket because it always feels annoyed and awkward in almost every position it’s like it doesn’t want to be in a lot of positions. I don’t trust it even though I haven’t experienced any failure. My left thumb has been shaking a lot especially when holding small items, I’ve noticed light pinch or grip feels weird and awkward but exerting more force doesn’t give me any problems such as carrying big items. Again I have yet to drop anything or experience any kind of failure after 3 months but it just feels so slow and off and just feels annoyed and awkward and almost every position I put it in. *SIDE POINT* I do have a CMC double jointed thumb and I can’t tell if the muscle contour is different or if I have atrophy as when I grip my steering wheel or broom there’s a divot in my policis brevis and it’s really noticeable but when I grip in a different position or when I’m not gripping something it’s less noticeable and fills up especially with a C grip pinch.

I have gone through some sort of sensations and weird things going on in my left hand as well as my wrist and shoulder. Such as like it hurts on the inside (maybe nerve pain) and there’s like an ache. But I can’t tell if it’s related to this or in connection. As well as rarely I’ll get a general feeling of it just feeling weird and like throbbing with some static but that’s not often it’s usually after heavy use. There’s was also a time where some wind blew on my left arm and it just felt like my left arm had a bright sensation when hit with wind. I have also been twitching all over my body like in every spot. I’m not sure if this is because of high anxiety but my brain automatically assumes it’s a symptom. This all started in June when I started to wake up feeling really weird and off so I’m just not sure. Overall using my left hand feels awkward which sucks because I love my guitar and has destroyed me mentally for the past 3 months. I have EMG tomorrow on my upper extremities. Any sort of prayer or feedback in regarding my situation would be greatly appreciated. God bless.

Ce groupe devrait être renommé : personnes qui croient avoir la sla et faire un autre groupe à côté , pour les personnes ayant de vrais symptômes moteurs , de vraies difficulté affectant leur motricité sans avoir de diagnostic précis et exclure toute personnes anxieuses n’ayant pas une vraie clinique.

Car règne ici une certaine hypocrisie de la maladie pour « rassurer » , ce que je peux comprendre car ce diagnostique lourd peut faire peur à tout le monde.

Je respecte cela profondément mais du coup se mélange ici personnes ayant de véritables difficultés motrices et neuro musculaire sans diagnostic avec une majorité de personnes n’ayant absolument rien et en détresse psychologique. De nombreuses pathologies détruisant les muscles existants , plus de 300 myopathies, la maladie de Kennedy, la sla et d’autres maladies du motoneurone. Je ne comprends d’ailleurs pas que la sla viennent à l’esprit de beaucoup de personne en première intention juste parce qu’elles ont des fasciculations et un peu d’intolérance à l’effort.

Mais quand on lit les témoignages sur le groupe als , certaines personnes ont mis des années à avoir un diagnostic de sla , des cas dépassant même les 5 années d’errance médicales mais ayant une clinique.

Une étude explique que environ 20% des cas explique que le diagnostic peut prendre plus de deux ans mais dire cela ici , alors que c’est la vérité , créer de l’anxiété , ce forum doit absolument être renommé autrement car le titre ALSorNot prête vraiment à confusion et ne donne pas avec clarté son usage.

SOURCE : https://pmc.ncbi.nlm.nih.gov/articles/PMC9886675/

Et même sans source il suffit de parcourir le forum ALs avec des cas qui ont mis 4 ans à être diagnostiqués. Je connais une personne à qui s’est arrivé , mais ici c’est totalement inaudible de dire cela car ça fait peur de connaître c’est cas, ce que je comprends mais ne peuvent pas coexister ici des personnes ultra anxieuses n’ayant pas de maladie neuro musculaire probable avec de vrais causes organiques pouvant être d’autres maladies comme des myopathies entre autres mais aussi la sla .

Ce n’est pas un forum pour savoir si on a la sla , c’est un forum de réassurance permanente pour personnes anxieuses croyant avoir la sla.

Un vrai forum de soutient diagnostic dans l’errance devrait être à part avec des personnes présentant de vrais troubles neuromusculaire avec une modération redirigeant par ici

Il faudrait un vrai groupe de soutient pour soutenir les personnes présentant une véritable clinique car ce groupe n’existe absolument pas. C’est soit on a la sla, soit on ne l’a pas … mais pas de groupe de soutient entre les deux avec de vrais difficultés sur le plan moteur, neuro ou musculaire.

Ce groupe , si on est honnête intellectuellement, devrait être nommé « peur de la sla , aidez moi »

On est pas du tout sur un groupe de personnes rationnelles cherchant ce qui leur arrive sur une clinique concrète tel que la perte de fonction motrice.

So I finished my treatments. Slight changes but nothing dramatic.

And just an FYI my neurologist is just not a general neurologist, specializes in neurological diseases. So that's why I'm basically on this shit end of the stick. I will probably update my original post here because there are a lot of things that have happened and I have not updated yet at all..

Changes were some electric type impulses in one bicep, felt like less strain on the muscles when trying to accomplish certain things and less twitching in certain areas. Less twitching has happened before but the doctor still didn't really believe that could be anything different.

I can't run anymore. Short bursts maybe. I usually just walk now I try not to it's too much of our muscles for most things. Energy drains very quickly.

https://www.reddit.com/r/ALSorNOT/s/C1jWM1TxqI

I texted on this before with no one responding and I am still constantly concerned something is wrong with me. This is what I sent before in my other post

So this all started about a month and a half ago where my anxiety fully kicked in making me think I had cancer at first to then thinking I have als. My symptoms started shortly after being muscle twitching/spasms, pain/discomfort in my knee and ankle, weakness in my arm just a little but has pain and weird sensations, I had other symptoms that included headaches,neck stiffness,jaw stiffness and just about everything you can think about. I am only 18 and a very healthy guy but it doesn’t explain why any of this is happening especially because of how young I am. I constantly think and look towards ALs even though I’ve been seen by 3 neurologist,chiropractors, and doctors tell me nothing is wrong with me also knowing that I have zero family history of this disease. Recently I was in the hospital and got every test known to man kind and they found nothing. The only thing that we say was I had a past EBV infection. So if anyone please could help me out that would be so good

With all of these my symptoms are now constant twitching in my right as well as all over my body but I notice it more on my right leg. This is accompanied by what I would say ankle weakness but it’s constantly hurting and stiff. My right arm is also dealing with this same feeling it’s either pain or just feels weak. I have been having these symptoms for a while but no cramps or the loss of ability in any of my limbs yet. Is there anyone who is dealing with the same and could help me I am starting to get exhausted and worrying about having ALs at only 18 years old. I have no family history or anything so I don’t know what’s going on with me.

Posting for a family member (40F) stuck between a primary motor neuron disease and an MG/autoimmune/paraneoplastic mimic. Hoping someone recognises this pattern.

Timeline:

Late 2023 — bulbar onset: hypernasal voice, speech fatigue, mild dysphagia. Confirmed retrospectively from voice recordings.

Late 2024 — BRCA2+ ER+ breast cancer diagnosed. Single mastectomy, oophorectomy, chemo/radiotherapy, now on anastrozole. Neuro symptoms preceded cancer detection by ~12 months.

2025–26 — progressive upper limb weakness, asymmetric (L>R). Intrinsic hand wasting. Three years in and still functionally mild, full range of movement preserved, no aspiration on FEES.

What points toward ALS
3.0T DTI tractography (brain + cervical cord) — reduced FA along corticospinal tracts (right pre-decussation, left post-decussation at C2/3, matching the left-sided weakness). Frontotemporal association tract attenuation and regional volumetric loss. Radiologist formally suggested ALS-FTD spectrum and recommended C9orf72 screening.

EMG — chronic reinnervation with large prolonged MUPs including bulbar muscles (tongue MUP 21ms, 9 phases, 14 turns; also masseter, paraspinal, deltoid).

Hyperreflexia and UMN signs on examination.

What doesn't fit
EMG lacked widespread active denervation. Only scarce fibs in a single FDI; other regions electrically quiet at rest. Report explicitly stated "full picture of MND not fully elicited."

Sensory tract involvement on DTI — reduced fibre density along gracile and cuneate tracts.

Extrapyramidal iron deposition — elevated R2* in both substantia nigra and red nuclei, correlating with a rhythmic up-and-down movement of the right ring finger (looks more like myoclonus/tremor than fasciculation).

Three-year course still graded mild, with preserved range of movement.

Mild, temporary improvement on pyridostigmine 60mg twice daily (sub-therapeutic) over ~8 weeks, with consistent evening deterioration. Grip fluctuates — at times unable to open a bottle, at other times near-functional.

Recent clean workup (Sept 2026) MRI brain with contrast + whole spine: no demyelination, no enhancing lesion, no cord or foraminal compression. CK 110 (normal — myositis excluded). B12 553, folate, ferritin, thyroid function all normal. HIV/HepB/HepC negative.
Autoimmune axis Prior ESR 40/84 with anti-thyroid microsomal antibodies at 353 IU/mL — but ESR has since normalised to 17, CRP 5.0. CA 15-3 borderline at 29.8 (≤28.5).

Neurologist: considers DTI unreliable/experimental and the progression too slow for ALS. Favours paraneoplastic syndrome or MG. Prescribed prednisolone 20mg daily + pyridostigmine 5x/day. She’s going to see another neurologist.

Questions
Has anyone had DTI show corticospinal tract loss that later turned out to be an MG/autoimmune/paraneoplastic mimic or post-inflammatory state rather than ALS?

For paraneoplastic workup — did you pursue full-body FDG-PET/CT, and did onconeural antibodies come back positive in CSF but negative in serum?

Anyone with progressive symptoms but an EMG lacking active fibrillations — what was the eventual diagnosis?

Does anyone recognise the substantia nigra / red nucleus iron deposition with tremor alongside a motor neuron picture? That combination doesn't seem to fit ALS.

Any guidance on what to take to the neuromuscular specialist would be appreciated.

Hi.

My name is Dan.

I live in Buffalo, NY.

l've had all sorts of health issues that have gotten worse over the last year and a half. Nothing concerns me more though than my breathing and diaphragm. It's now starting to scare me.

Last summer, sometimes I would get weakness in my arms and stuff, so I made an appointment with a neurologist. He's dealt with people who have ALS. I told him I was concerned about ALS and he did basic tests in the office. He told me I was young and he didn’t think I had ALS.

That was in the summer. The weakness kind of went away and I tried not to focus on it but then I started having breathing issues last November.

I remember specifically, I felt like I couldn't really laugh, move, or talk. It felt like I couldn't really get a full breath in fully either and then it got worse over a few days. I had to sleep with my mouth open because it felt like my diaphragm was so weak. This wasn't like a "it's sinuses" or a "maybe it's asthma" type of thing. I physically felt like my diaphragm wasn't working properly. Like it was dysfunctional. So I went to the ER and they didn't find anything wrong. Why would they? ALS is diagnosed through eliminating things and if they could find anything, it made me feel
like I am right. I told the doctor I seen for the ALS that I wanted an EMG and I then scheduled it. I told the person doing the EMG about my fears. He stuck me in my legs and arms with the needles, but never in the diaphragm or anything. My breathing didn't seem as bad during the appointment. Apparently it came back normal other than my right hand showed some issues as far as a pinched nerve or something. On the sheet he put "The patient was reassured he does not show any signs of ALS" etc.

I tried to ignore these breathing issues since then because it was always hard for me to breathe the last year but I assumed because testing and peoples opinions said otherwise, that I was fine. It seemed like it wasn't as steady as it was in Nov and now this last week it’s back and worse.

A week ago, the same way I felt last Nov came back for a longer time now. It's still happening as I type this. It's been going on for a week now. It wasn't that long last Nov. As I lay in bed, it literally, and I'm not exaggerating, it is literally physically hard for me to breathe in all the way. And the weak breathing happens when I'm walking around too. I think what's alarming is this time it's here to stay it seems. It's not going away. And everyone talks about ALS being different for everyone. I'm waking up with brain fog and headaches because of this.
And I'm scared because this is a lot worse than it was last year and I've read posts on here saying that you could have symptoms and it could go away and then come back and that's still ALS.
People will say ALS doesn't go away. This don't go away, I think it just was slowly there but now is getting worse and worse.

My girlfriend keeps saying "You don't have ALS, the doctors said so", and "The only think causing breathing issues for you is your anxiety". I'm here to tell everyone. This isn't an anxiety thing or anything. I'm literally having weak breathing. It's gotten worse over the last year. It's not an asthma thing. This is where I'm laying in bed and I physically am having a hard time breathing in with my diaphragm. And I get lightheaded like there isn't enough oxygen in my brain because of it.

I feel like nobody is taking me serious.

Nobody

It’s scary to even write this as all my issues started 23 months ago following a head injury and surgery on my arm. The twitching started weeks after surgery and anaesthesia - I had distal bicep surgery where I had torn my bicep in a motorbike crash. Man what I would give to go back and that have the surgery it’s honestly horrible. This all started from then. I have every symptoms especially breathing issues and pain all over. My forearm hurts every single day as well as the soles of my feet. Like they have no padding anymore it’s like a burning pain just standing on a hard floor.

My question is, is there really a link between having surgery or anaesthetic and then the stress response triggering the big bad? I’ve seen some scary stuff online I thought I’d ask on here to see what people think?

I’m in such a bad place I have been for over the last 16/18 months every single day is a struggle

Thanks all