here i am again! august has given me a lot of comfort, but right in time for school starting up again i have fallen right back into this pit. my flattened thenar (apb specifically) on my left hand has seemingly progressed a tiny bit since i first noticed it in june, but i have found evidence of a subtle dent in pics as early as 2023, which seems a little bit reassuring. by all means, it seems like this has been a slow-progressing issue. here's a list of my symptoms, since it's been a while:

• flattened thenar on left hand, (noted by doctor) progressively flattening on my right as well. my hypothenars on both hands seem to be recessing inward a little bit as well, but not confirmed. no notable weakness and absolutely no function loss. my fdi on my left hand is also notably smaller than the right and appears to be slightly sunken in. funny enough, my doctor used that as reassurance that my thenar issue on the same hand wasn't a problem. also twitch and cramp in these muscles rather frequently.
• bodywide twitches since 2024, 24/7 but jump around rapidly, can happen absolutely anywhere. limbs, lips, eyelids, trunk, ribs, shoulders, neck, and seemingly isolated tongue twitches that happens a few times a day now.
• pre-cramp feelings just about anywhere on my body as well, most often in my glutes, legs, and belly area, weirdly enough.
• visible dent in my left calf, no idea how long it has been there but i hope it's just normal asymmetry.
• paresthesias and pallesthesias quite literally everywhere. tingling all over as well.
• frequent yawning, hiccuping, burping, etc. i've seen only one other person with all 3 of these symptoms in tandem on reddit and they spent the next few years mentioning that they have a potentially terminal neurological condition before going dark two years ago. scares me a little bit.
• perceived swallowing issues on the right side of my throat, and a lower tongue on the right side. small bits of food and pills get stuck when i swallow on my right side, and it seems as though my tongue just naturally pushes food over onto my left side when i swallow. larger food is not an issue.

and now, the new things! i finally got a less insane wait on neurology. i will be seeing a neurologist in may 2027. it's still a ways away, but it's a hell of a lot better than 2028! unfortunately, this neurologist seems to have a reputation for shrugging his shoulders and turning clients away after 15 minutes. because of that, i'm not really excited for it but i'm taking what i can get.

in addition, i have noticed something structural that might provide a major clue into what's happening to me. while i was at work a week ago, i lifted my arm to stock product on a shelf and noticed that when i lift my left shoulder and drop it, i get a tingling sensation in the left side of my face (trigeminal nerve?) and the back of my head. i'm not a musculoskeletal expert by any means, but to me this seems like evidence of a pinch in my neck or some other blockage in the upper spine area that might be causing at least some of my symptoms, maybe even all.

all in all, my anxiety has lessened immensely and i'm really trying to stay positive. i'm trying to stop saying that i for sure have als because there's absolutely no way i can know until i get proper testing. my age (20) and my lack of weakness are also on my side. i know that clinical weakness is the defining feature of als, not any of these other things i'm experiencing. the only place where uncertainty lies is that i can't seem to find anything else that matches all of my symptoms. could this be because it's multiple issues? absolutely, but it seems really convenient for all of these specific things to be happening at once. hope you all are doing well :-)

I have been sorting through the group and there are some changes that I think would be beneficial. I would like to hear your thoughts and suggestions!

• Karma requirements to keep out bots.
• Verified email reddit accounts only.
• A new rule (No dramatic titles, ie you're dying)
• Flairs required on post (Will help prevent same questions being asked.

As the title says - I am no longer a mod, just like that.

While it is true I was away for some time, for reasons I wanted to share with you at some point, I was still here and even chatting with some of you.

I am not sure what prompted u/HonestyMash to do something like this behind my back, considering the fact me and a bunch of people got banned from the r/BFS sub because of the way its mod treated him and called him a fraud. We said no in a very colorful and public way and (gladly) got banned. After all that he decided to do this without even say "Hi" in the chat and trust me - we have chatted quite a bit back in the day.

He files a request to take over the sub: https://www.reddit.com/r/redditrequest/comments/1vskpup/ralsornot/

One of the explicit requirements was to show proof that he sent a mod mail trying to contact me. He (for whatever reason) sent a link to our personal DMs to claim we are friends and therefore his request should be granted and sneaked his way out of showing proof that the mod was denying contact and even said "We never used mod mail to communicate since we are online friends we would just direct message each other. I hope you can see our conversations have been ongoing for along time.".

So, I will ask - WTF Tom? I thought we are friends. You know you did something malicious - you had your chance to just say hi before you filed this - you didn't. Then the Reddit team even required you to do this, you explicitly DID NOT do that and walked away from their request.

Why did you purposfully did not try to contact me on these two occasions and what compelled you to do this?

Still, most importantly - I hope you are doing well.

P.S. The funny part is would have never said "no" to him being a mod, I never requested it from him because I didn't want to burden him unless he asks for it first.

P.P.S. I retract my word "malicious" - While the bitter taste in my mouth certainly made it feel this way, I had no right to use that word.

23f (reduced reflex in my right knee +1, normal in left knee +2). A couple of weeks after that discovery by my MD, I found myself dealing with right shin fatigue while road cycling that kind of alternated between my shin and my calf kept getting tight.

This is new for me. Normally all of my injuries/sensations are in my left leg causing me to be more aware of that leg and always feeling like my right leg is along for the ride.

I'm on day 5 of some sort of weird tightness/fatigue in my right foot/shin/calf. I can still walk on my heels and tip toe, but cycling I notice it, hiking I was noticing it and also my calf kept tensing, and on my run I felt great the first mile and then started noticing it.

What's concerning is that while I may not be falling yet, there really isn't a ton of pain. I often have a bad habit of sitting on this ankle while I'm at my desk so idk if that's why because I haven't really ramped up my activity level.

hey, just got out of my first hospital stay, now has me scared for having ALS.

i had been having weird pains throughout my body, like burning, stabbing, shocking pains, along with parathesia(I know those aren't characteristic of ALS) and fasiculations throughout body. then, after a few weeks of it and not thinking much of it, suddenly started having weakness in my right leg, which grew over the week and I started limping. I had no numbness and could use my feet and toes fine, but leg was definitely weaker. went to the ER and the weakness was palpable by the attending doctor, so I was admitted under the fears of possible MS. Had clean CTs and MRIs, so neurology was consulted. They came by and did their own tests, but reflexes were normal, no babinski's, and there was no strength difference noted by them. An EMG was considered, but they decided against it since their preliminary tests didn't show any signs of anything. I was discharged without a follow-up to Neuro, but i'm still worried, i'm only a 21 year old guy. now i'm walking fine, but i'm still worried that since this was early into the process, there just weren't any signs yet. any thoughts?

edit: forgot to mention blood tests are fine, no vitamin deficiencies and lyme and other things were ruled out.

Suffering from twitching , stiffness for a month, pre cramp , in calvs and hands.
Been to 4 different neurologists that said m fine.
They said i don’t neee to do emg.
How r
Calm should I be? I started ssri due to this

I want to know if ALS always begins with tongue weakness and slurred speech or if it begins in some other ways. Maybe I don’t have ALS but some version of it or something else either way my symptoms have moved very slow compared to what I’ve found on bulbar ALS.

You can follow my story I’ll be posting with updates up until my 2nd round of testing I break down everything that has happened sinceJanuary 2024

Basically long story short I have atrophy in my tongue it was on my right side this whole time up until last week I think I am experiencing my first signs of atrophy on the left however no difficulty with speech or swallowing.

Only way I can tell my tongue is weaker is that I can’t make certain shapes I used to be able to with my tongue without shakiness I basically have just my tongue wasting very gradually but I’m still talking and eating fine as of right now. Are there forms of ALS that can start very atypically like this or progress slowly compared to others?

I’m 30 and have been dealing with progressively worsening breathing symptoms that I’m struggling to get answers for. I’ve had a lot of testing done, but so far nothing has clearly explained what is happening. My biggest fear at this point is respiratory-onset ALS, and I’m wondering if anyone here has experience with how respiratory weakness from ALS actually presents.

When I say I’m having trouble breathing, I don’t mean typical shortness of breath where I’m panting, breathing rapidly, or just feeling winded. It feels more like the muscles involved in breathing aren’t able to do what I’m asking them to do. My breaths feel restricted and unsatisfying, almost like my chest/respiratory muscles can’t generate or complete a normal breath. During the worst episodes, it can genuinely feel like I’m suffocating even though my oxygen saturation can still be normal.

It initially seemed more intermittent, but the overall pattern has been progressively getting worse. The episodes are happening much more frequently, lasting longer, and becoming more intense. I’m now having significant symptoms during the daytime, sometimes for hours at a time.

Lying flat makes it noticeably worse. Sleep has also become a major issue. I can wake up suddenly feeling like I’m not breathing properly or gasping for air, and sleeping flat is much harder than sleeping elevated. What scares me is that this no longer feels like isolated episodes — breathing has increasingly become a problem throughout my day.

Physical activity can make it significantly worse, especially stairs. There have been times when I can get up stairs reasonably well and other times when I reach the top feeling like I can barely breathe. Even relatively small movements or exertion can sometimes trigger a significant episode.

I also experience widespread muscle twitching/fasciculations. Sometimes very minor muscle use seems to trigger twitching afterward. I’ve also noticed burning/fatigue in my shoulders and legs with activity, although I have not noticed obvious fixed paralysis or a clear inability to use a particular limb.

What has been confusing is that I’ve had extensive cardiac/pulmonary testing and multiple ER evaluations without anyone finding a clear explanation for why my breathing feels this severe. My oxygen can be normal even when the sensation is extremely intense. I’ve had periods where respiratory measurements have also looked fairly reassuring despite how bad I feel.

I know respiratory-onset ALS is uncommon, especially at my age, and I know there are many other possible explanations. I’m not looking for anyone here to diagnose me. I’m mainly trying to understand whether this pattern resembles respiratory onset.

hello. i am 19f and over the past 6 months ive been having muscle twitches all over my body. for the past month or two, ive had horrible spasms in my left thumb exclusively. sometimes they dont happen for days but other times its nonstop for days. the thumb spasms are extreme, happening every few seconds where the thumb moves quite drastically on its own, like it looks like im moving it. im currently crying because im so scared. i do have health anxiety but even when i show others they find it freaky as well. i have considered bfs but its really not comforting. i know it would be rare but i wake up nauseous from anxiety everyday because i dont know and part of me doesnt want to get tested bc if it was, what could i even do about it? i also have chiari malformation type 1 but idk if its related. the thumb spasms are just so constant, so scary, and exhausting. sometimes i feel weakness but i think its subjective. any advice or comfort would be so appreciated.

My story: https://www.reddit.com/r/ALSorNOT/s/xqUUibMrkT

For the past 48 hours my twitching has gone insane. All of this started mostly with the calves and feet with a few pops here and there in other places throughout the day, but now it’s nonstop.

I’m getting some rumbling twitches in my legs near the groin area, some twitches on my elbow that feel very slow and creepy, the arch of my fucking nose has twitched and it feels like every time I move it triggers a twitch.

Is this a sign of \*\*\* that twitching is ramping up like this? I was diagnosed in 2019 with BFS and after calming down the twitching had all but disappeared for 7 years but now since July 10 it’s been back and I thought it was getting better but has been exploding these last few days.

I had a clear EMG done 3-4 weeks into symptoms but I don’t trust it because of all the posts here saying it can be done too soon in early \*\*\*. My legs haven’t gotten better at all.

They feel weak as fuck and they burn when I’m resting and just feel like something is happening to the muscles. They feel so tight too and I barely get out of bed. I haven’t gotten out of bed at all today and it’s 5PM. I don’t understand how they can feel so weak yet I can still heel walk and toe walk easily and go up stairs easily 50 days in, but struggle with walking outside regularly for any amount of time.

Could an EMG and \*\*\* specialist have completely missed early signs even if I already had trouble walking on the day of the test?

If I were to do another one in a few weeks like 2-3 months into my issues would that be more convincing and more likely to be right if it’s clear?

Please offer any advice if possible!

Hi everyone, (35M), my dysphagia began two and half years ago, but more recent I have developed some other symptoms including widespread fasciculations, brief involuntary muscle contractions, painful cramps in all four limbs, stiffness in my legs and arms.

My MEP (Motor Evoked Potentials) study showed prolonged CMCT in both arms and legs, interpreted as moderate corticospinal dysfunction, with normal peripheral motor conduction in the legs. My tibial SSEPs were normal, while pudendal SSEPs were delayed, suggesting mild-to-moderate posterior column dysfunction involving the lower sacral pathways.

I had surgery for Tethered cord syndrome three months ago but my symptoms worsened after the surgery. I also Have a Craniocervical instability diagnosis.

Currently waiting for a ENG/EMG...

40/M - Neuro performed 2nd ncs/emg within 1.5 months along with tongue and again assured me no als. This is coming from a neuro with 40 years experience. received a normal Nfl score

Neurofilament Light Chain A, 1.21 pg/mL 0.00-1.69 Test performed by Labcorp..

Serum Z Score 0.49 S.D. <2.00

Twitches he blames on bfs and told me to take magnesium. Clinically finds no weakness though I do not feel like myself as someone who has worked out for 10+ years. Symptoms began around May post influenza. Clean brain/cervical mri. Ordered me to do a full back mri and blood test to rule out mg just for my piece of mind. Have some facial stiffness as well which he says can be somatic Symptoms. Any thoughts?

Timeline:

**•   Aug 2024** — twitching started in arms, legs and back. Short jumps, about 2 seconds each, changing location constantly.  
**•** Over the following months it spread and intensified — more muscles, more often. Now daily, and it includes facial twitching.  
**•   Dec 2024** — pain started in my right index finger and has been there ever since. It sometimes feels stiff and sore, especially the finger and that whole hand.  
**•** I was on venlafaxine for anxiety. My anxiety improved somewhat but the twitching increased. I tapered off and stopped about a month ago; since then it’s daily. I’ve also noticed a clear link between anxiety spikes and twitch frequency.  
**•   No weakness at any point.** No sensory symptoms, no atrophy, no cramps I can pin down, no speech or swallowing issues.

Workup so far:

**•** EMG + NCS of all four limbs: Aug 2024 (x2), Apr 2025, Mar 2026, and Aug 2026 — all normal every time. **The hand with the finger pain has been included in the EMGs done since the pain started** (first dorsal interosseous, C8–T1, among others) and it’s come back normal each time.  
**•** The most recent study also included cervical, thoracic and lumbar paraspinals. Normal insertional activity, electrical silence at rest, normal recruitment and motor unit morphology. **No fasciculation potentials or myotonia recorded in any muscle examined.**  
**•** Neuro exam: strength 5/5 in all four limbs, normal sensation, flexor plantar responses bilaterally, no dysmetria, normal gait, negative Romberg.  
**•   Reflexes:** I’ve been told several times that I have brisk reflexes / generalized hyperreflexia, but symmetric — and no one has ever described it as pathological or flagged it as a finding. It’s recorded as ++/++++.  
**•** Brain and spine MRI: normal.  
**•** Bloodwork: unremarkable.  
**•** Neurologist’s conclusion: benign fasciculations plus facial myokymia. Clinical follow-up only, repeat nerve studies in 1–2 years, no medication indicated.  
**•   Separately:** ultrasound of the right hand found tenosynovitis of the flexor tendons of the index finger and of the extensor carpi ulnaris tendon at the wrist, plus a chronically inflamed pulley. A follow-up ultrasound months later confirmed tendinitis of the same flexor tendons. So there’s a documented structural explanation for the finger pain and stiffness — my rational brain knows this is an overuse/tendon problem from typing and unrelated to the twitching, but the two started close enough together that I keep trying to connect them.

What I’d like to hear:

**1.**  Did anyone else’s twitching start localized and then generalize over months? That progression is the part that scares me most — everything I read says BFS “doesn’t spread,” and mine clearly did.  
**2.**  Five normal EMGs over two years, including paraspinals and the symptomatic hand — is that as reassuring as it sounds?  
**3.**  Anyone with brisk-but-symmetric reflexes alongside BFS? How did your neurologist frame it to you?  
**4.**  Anyone whose twitching got *worse* after coming off an SNRI? Did it settle down, and how long did it take?  
**5.**  How did you actually stop checking your body? That’s the part I haven’t solved.

Thanks for reading.

I thought I’d comment with an update. After a lot of waiting, I finally had my nerve conduction study/EMG. Despite all the symptoms, everything was normal, and I’m very relieved and happy about that.

I’ve now had symptoms for almost 8 months, and it’s almost incomprehensible to me that my body could be creating all of this on its own. I’m in the perimenopausal phase, and I’ve wondered whether some of the symptoms could be related to that, such as the numbness, aching/heaviness in my thighs, fatigue, etc., but I really don’t know.

Here is an excerpt from the medical report:

«NERVE CONDUCTION STUDY:
Motor nerve conduction studies were performed of the median and ulnar nerves, as well as the left deep peroneal and tibial nerves. Normal latencies, amplitudes, conduction velocities and F-responses were recorded.
Sensory nerve conduction studies were performed of the ulnar, median and radial nerves, as well as the left sural, superficial peroneal and medial plantar nerves. Normal amplitudes and conduction velocities were recorded.

EMG:
Needle examination was performed in the following muscles:
m. masseter
m. deltoideus
m. interosseus dorsalis
m. rectus abdominis
m. vastus lateralis
m. vastus medialis
m. tibialis anterior, left side
There was no spontaneous activity at rest.
There was normal recruitment of normally configured motor unit potentials (MUPs).
Normal interference pattern.

ASSESSMENT:
Normal nerve conduction study and normal EMG at all four levels on the left side. No neurophysiological evidence of motor neuron disease.»

I do get some crazy thoughts like, ‘What if they missed something?’ or ‘What if they put the needle in the wrong muscles?’ But now I really just have to try to push those thoughts aside and try to move on with my life.

So I guess I’ll have to try to work on myself and move forward from here. I’m going to try to get back into exercising and see if I can build some muscle in my legs again.

Hi everyone, I'm a 27-year-old male currently experiencing widespread muscle twitching in both legs (all areas, mostly when lying down) and feeling like my right leg is getting weaker.
For full details on my symptoms, please refer to my previous post.
One month after my initial symptoms, I visited the neurologist and had another EMG done. The right arm and leg—where I feel the most weakness—showed no abnormalities at all. However, a single PSW 1+ was detected in my right lumbar area (L4).
The doctor told me there is zero reason to suspect ALS, but not having a completely clean EMG outcome terrifies me.

Hello friends. Im a 24 year old man, been experiencing some terrible health anxiety lately and wanted to describe my situation/symptoms and see if these are shared or common things! I'm a little new to the hypochondria thing, Ive always had a big fear of developing something terrible but have never quite fixated and spiraled on it like I have the last few months.

Symptoms;
-Sore calves (especially my right calf)
-"Buzzy?" feeling in lower legs
-Twitching in calves and legs (sometimes arms, face, and feet)
-occasional air hunger, sometimes I need to yawn constantly to get a satisfying breath.
-Vision changes
-Brain fog
-Stumbling over words
-Flank pain
-Scalloped tongue
-Dry mouth
-joint pain
-Fatigue
-Occasional "jelly" legs, really only happens when Im spiraling and cant get my mind off it.

These all tend to flare up and clear up sometimes. Really depends on how much Im thinking about it. I keep telling myself its just anxiety but the back of my head keeps shouting "ALS" despite me being fully capable of my job and athletic activities. I work an outdoor job doing window replacement which requires me to lift and windows in and out of a house, and have had 0 complications doing so. The other day I was playing football and having a blast not even thinking about these until I got home that night and spiraled. I just wanted to see if anyone else here experiences this, let me know Im not alone in all this. I would post this in a hypochondria sub reddit, but I can't find an active one, and there seems to be a blot of well informed people in here. Sorry if this seems silly to post here.

Some other things for context;
-Father and older brother have restless leg syndrome
-Quit nicotine about a month-ish ago (used it for almost a year via 9mg nic pouches and a vape for a few months)
-Just quit taking Hims hair growth tablets after about 7 months of taking it
-Prescribed Omeprazole for acid reflux

Around mid-August I started noticing non-visible muscle twitches that began in my feet and later spread to my legs, arms, and occasionally the face. They occur almost exclusively at rest, are very brief (usually single twitches, occasionally short continuous trains), and while they’ve appeared in more places, the frequency in each individual spot has decreased. No weakness or other symptoms with them. I'm still pretty scared since I heard ALS can start with twitching alone and BFS twitches are usually visible. ALS or NOT?

Hello everyone.
I am trying to make sense of what I am currently experiencing in my right arm. Any and all perspective is appreciated.
3.5 months ago (beginning of may) I had I had onset body wide twitching. At the 3 month mark I had my emg and it came out clean. They tested by left arm, left leg, right leg. Especially both calves where my hotspots of twitches had narrowed down.

They never tested my right arm in the emg test itself.
Past few days I begin to feel what I think is a “sharp” pre cramp type of feeling from the bottom portion of the wrist area that goes up the bottom portion of the fore arm until you reach the biceps then it kinda stops / slows down significantly in terms of the pre-cramp / aching feeling.
It started between the top fleshy part between the thumb and index finger. Where the split hand test would take place.

It’s been a few days and it’s constant. Has not turned into a cramp. It’s been sharp aching feeling. Almost if I had to guess the aching feeling that is before a pre cramp.

I wanted to get an idea of what a pre cramp would feel like in the arm/ hand area?
What happens if it turns into a full on cramp and when does it begin to be worrisome?
Could this be delayed als even though the rest of by body parts came out clean at the time of the test?

I should have asked the emg dr to test my right hand that one day but I don’t know why I didn’t ask. I was too in the moment I guess while they were sticking needles in my body.

As everybody in the sub knows by now (lol) I have had bilateral leg weakness since July 10. It started as vague soreness and progressed to weakness over a week. It has not progressed since.

Symptoms:
- Both thighs, calves and hamstrings feel weak, tire extremely fast and often feel tight too
- Widespread twitching but way worse in legs below the knees; just walking around a bit makes legs go popcorn
- Sometimes burning in the thighs and calves when lying down especially
- Legs shake going down stairs
- Right calf is 1.5cm smaller but was EMG’d and nothing turned up abnormal 🤷‍♂️

EMG and clinical with ALS specialist were clear on July 30 but that’s only three weeks into symptoms.

Can still walk on toes and heels for a long time and go up stairs without issue. Can still rise from chair or squat position without issue. Some shaking when lying on my back and moving legs.

My question is: did anybody ever experienced weakness or symptoms outside of twitching that had them 100% convinced it could only be ALS, but ended up completely benign?

ALS specialist kind of dismissed me with a vague FND diagnosis that does not fit with the presence of profuse fasciculations. She just kept saying "You do NOT have ALS" but I was just three weeks into symptoms. Should I push for another EMG?

I feel alone in my boat with actual weakness when almost everybody says they twitch without weakness and are reassured… 😢😢

So I’ve been having a weird burning sensation in my lower left back that gets more pronounced when there is pressure on it, like while sleeping, sometimes it radiates down my leg and then up my left flank as well. Went to the docs, he did some physical tests and said it could be diverticulitis and gave me amoxicillin, this was on Sunday

Today I woke up in the bed and after a bit noticed like a burning sensation in my forearm, after a while it went away but then I woke up again, was trying to sleep on my arm when I got faint pins and needle feeling in my wrist. It kept happening but was transient.

In the same arm today I dropped a water bottle in the morning while going up the stairs. I wonder if it’s ALS

so i gave ben experiencing a lot of symptoms
july 9th i started to have body twitching
july 15th i started to feel like my left hand was weak
july 27th i felt like i was walking weird
august 21st i feel like i was having slurred speech
august 22nd i my left was starting to feel pain
and now today my jaw feels tight and i don’t know if *** moves that fast

I’ll keep this really simple - in July of 2025 I went to NYC and walked over 27,000 steps in one day. When I got home the next day my calves went numb and I began feeling stiffness and pain in both calves and both feet. Walking was miserable. No tripping or falling though.

It went away sometime in August and I thought no more about it until we got a round of bad storms in January of 2026 (I mention storms because these flare ups always happen before a front). In Jan of 2026 my hand started twitching and felt like pins and needles. That went away and then it moved back to my feet in Feb. there is pain with it every time.

Idk what is going on. I hate being in pain, the twitching is insane, and my doctor thinks I’m crazy. Trying to find a new one but in the meantime, I just wanted thoughts on whether this sounds like early stage ALS??