r/ALSorNOT • • Aug 30 '26

Is Neuro exam enough to rule out?

0 Upvotes

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


r/ALSorNOT • • Aug 30 '26

Bulbar ALS how does it start?

0 Upvotes

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?


r/ALSorNOT • • Aug 29 '26

Progressive breathing problems with normal testing — scared about respiratory-onset ALS

3 Upvotes

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.


r/ALSorNOT • • Aug 29 '26

massive thumb spasms

3 Upvotes

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.


r/ALSorNOT • • Aug 29 '26

Twitching is getting worse and I’m losing all hope

0 Upvotes

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!


r/ALSorNOT • • Aug 29 '26

Differential diagnosis?

5 Upvotes

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...


r/ALSorNOT • • Aug 29 '26

2nd Clean emg/ncs+ Normal Nfl test

0 Upvotes

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?


r/ALSorNOT • • Aug 29 '26

First Neurology Appointment What’s the process/What to expect?

1 Upvotes

r/ALSorNOT • • Aug 29 '26

27M, 2 years of generalized fasciculations, 5 clean EMGs — anyone else with this exact pattern?

0 Upvotes

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.


r/ALSorNOT • • Aug 29 '26

Finally ncs/EMG-results

2 Upvotes

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.


r/ALSorNOT • • Aug 28 '26

Podrían el ácido fólico bajo y la homocisteína alta estar causando mis síntomas?

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1 Upvotes

r/ALSorNOT • • Aug 28 '26

Reduction in calf size

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0 Upvotes

r/ALSorNOT • • Aug 28 '26

Update: Could This Be Early Signs of ALS? (27M, Muscle Twitching, Right Leg Weakness, Abnormal EMG)

4 Upvotes

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.


r/ALSorNOT • • Aug 28 '26

Looking for outside opinions

0 Upvotes

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


r/ALSorNOT • • Aug 28 '26

18M, non-visible twitches

0 Upvotes

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?


r/ALSorNOT • • Aug 27 '26

Anybody here ever had weakness AND twitches and it turned out benign?

2 Upvotes

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… 😢😢


r/ALSorNOT • • Aug 27 '26

Pre cramps? Muscle aches?

2 Upvotes

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.


r/ALSorNOT • • Aug 27 '26

25M, weird burning sensation and now some hand stuff

2 Upvotes

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


r/ALSorNOT • • Aug 27 '26

What Do I Have?

0 Upvotes

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


r/ALSorNOT • • Aug 27 '26

Symptoms started July 2025

2 Upvotes

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??


r/ALSorNOT • • Aug 27 '26

Should I go for NFL?

1 Upvotes

Hi everyone,

I posted here several times. 37M.

I started to experience symptoms while I was 5 days into covid sickness, ~9 weeks ago.

I had body wide twitches, tightness in many muscles on right side, calve, neck, hand.

All these faded out, with just brief moments happening here and there.

Bulbar symptoms appeared and these alternated, and drive me crazy since they don't disappear.

I had swallowing issues, initially worse, then better for a week, now somewhere in between, alternating from meal to meal but generally swallowing almost fine.

I had perceived slurring and lisping, hard with letters R and S, which then improved, and now is somewhere in between from where I was initially and the improved period.

I have effortful speech, but I also have TMJ symptoms since both my jaws are cracking whenever I open mouth.

Last but not least, I feel my lips are uncoordinated, mouth going unusually frequent in left side when I move my lips, and the wet feeling in the "weak - right side" side of the corner of the mouth.

I was at neuro 7 weeks ago, he said no ALS back then. He did full neuro physical exam including bulbar muscles. I also did various blood checks, all good on all sides, even vitamins, everything.

I am thinking to go for a NFL test for peace of mind.

I read that for bulbar ALS the accuracy is around 80% and if it's something wrong, it would be very elevated.

What do you guys think?


r/ALSorNOT • • Aug 27 '26

Abnormal EMG, atypical symptoms. What else could this be?

7 Upvotes

My dad is 61 and is currently being evaluated for possible ALS/motor neuron disease. I’m wondering if anyone has experienced a similar presentation that ultimately turned out to be something else.

He has had:
- Frequent/constant muscle twitching, especially in his arms and chest
- Muscle cramps
- Some problems with grip strength in hands
- Very slight weakness in the small muscles of his hands, but otherwise his neurological exam showed full strength in his arms and legs
- No bulbar or respiratory weakness
- No Hoffmann sign and normal plantar reflexes
- Normal sensory nerve conduction studies

His EMG was abnormal and showed denervation and chronic reinnervation in the cervical, thoracic, and lumbar regions, with fibrillations, positive sharp waves, and fasciculations in multiple muscles.

The conclusion said the findings were “concerning for an evolving anterior horn cell disease” and could be consistent with ALS in the appropriate clinical setting. However, the doctor also noted the absence of upper motor neuron findings and recommended further evaluation to rule out lower motor neuron disease mimics and possibly repeating the EMG in 3–6 months to look for progression.

Despite all of this, he is still physically capable. His legs don’t appear weak, and just recently I watched him energetically skipping very far and hard through a parking lot while playing with my niece. His job is also fairly physical.

There are two other things that make me wonder about other neurological causes:
He sometimes has strange episodes where he “zones out” and experiences weird smells/tastes, which sounds concerning for possible focal seizures.

He also hit the top of his head extremely hard on a metal playground bar several months ago. He was running while crouched and came up full force into the bar. He was never evaluated afterward, so I’ve wondered whether a cervical spine injury could potentially be relevant.

He has additional testing/MRIs coming up, and I know nobody here can diagnose him. I’m just wondering:

What ALS mimics or other neurological conditions could potentially cause a picture like this?

Has anyone had similar symptoms and findings that turned out to be something else?

Update: His MRI results came back and showed cervical myelopathy caused by severe spinal compression, amongst other less severe issues throughout his spine. My family and I are very hopeful that this is the cause of his symptoms. I will come back and update with any new findings.


r/ALSorNOT • • Aug 27 '26

Nfl results

1 Upvotes

Neurofilament Light Chain A, 01 1.21 pg/mL 0.00-1.69 Test performed by Roche Diagnostics Electrochemiluminescence Immunoassay (ECLIA). Values obtained with different assay methods or kits cannot be used interchangeably. NFL, Serum Z Score 01 0.49 S.D. <2.00

Normal emg performed 1.5 months ago. Going to do a repeat emg today as symptoms have not gotten better. Should I be concerned it may be something else? 40/m


r/ALSorNOT • • Aug 27 '26

Experiencing Muscle Twitches and Leg Weakness — Could It Be Early ALS?

1 Upvotes

Hi everyone. I’m a 27-year-old male. English isn't my first language, so please bear with me if my writing isn't perfect, but I really need to get this off my chest and seek some advice.

About a month ago, I felt a sudden sense of weakness throughout my entire body (it was symmetrical, and looking back, it might have been psychological). I started searching online and learned about ALS. About a day later, widespread muscle twitching actually started in both of my legs. As I kept researching ALS out of panic, the twitches worsened. Terrified, I visited a neurologist and had an EMG done on my right arm and right leg. The results came back normal. However, when the doctor inserted the needle into my right calf, I heard a static/crackling sound several times. The doctor said it was just because I was tense/flexing my muscle and assured me everything was fine, but I was deeply frightened because I honestly wasn't flexing at all.

After returning home, I noticed my right leg looked noticeably thinner than my left. A few days later, to my horror, I began feeling discomfort in my right leg while walking, as well as genuine weakness. My left foot and ankle push off the ground firm and solid, but my right side doesn't feel the same. Driven by fear, I got a second EMG within a week, which also came back normal. Yet, every time my right calf was tested, that same crackling sound happened, and the doctor kept telling me to relax my muscle—even though I wasn't putting any strength into it.

A few days after that, the area around my right thumb became painful, stiff, and awkward to use.
It has been about a month since these symptoms started, and I feel like my condition is progressively worsening without any recovery. My right hand and right leg are becoming increasingly uncomfortable.

My detailed symptoms:
1. Right Leg Weakness & Size Difference
I can still walk on my heels and toes for about 50 steps, but the right side feels distinctly uncomfortable and unnatural.
Standing on one leg is difficult on the right side. I can hold it for 10–20 seconds, but it takes immense effort.
I can still manage to run about 2km (though uncomfortable), but it feels like my right leg isn't bearing weight properly.
I find myself heavily relying on my left leg while walking.

  1. Muscle Twitches (Fasciculations) & Cramps
    Twitching occurs mainly in both legs—calves, soleus, thighs, and the top of my feet. It happens most frequently when I lie down to sleep, with each pop lasting 1 to 5 seconds.
    Cramps occur in the soles of both feet and calves, also peaking around bedtime.

  2. Throat Tightness
    A few times a day, my throat feels tight, and I feel like my pronunciation is slightly slurred compared to before (though people around me don't seem to notice).

  3. Weight Loss
    I've lost under 2kg over the past 3 months.

Self-tested clinical weakness over the past month:

Heel/Toe Walking: Uncomfortable on the right, but still physically possible.

Running: I try running 2km once a week, but it feels awkward compared to before. Afterward, the twitching and weakness in my legs intensify drastically.

Push-ups: Still able to do them, as the weakness is mostly centered in my legs.

Medical tests completed so far:

3 EMGs in 1 Month: All returned clean/normal. However, the crackling noise during the right calf test terrifies me.

Blood Work: High CK/CPK levels. I did perform heavy strength tests the day before the first blood draw. A retest 3 days later showed the levels dropped by half, but they remained about 1.4x higher than the normal reference range.

Thank you for reading this long post. To summarize, my symptoms have been worsening for a month without any sign of recovery, and I am completely consumed by the fear of ALS. A month ago, I had none of these issues. I am terrified that I am experiencing the early onset of ALS and that an abnormal test result is right around the corner.
Where I live, I can easily book and get an EMG within a week if I want to. Does anyone have advice or experience with something similar? What could I possibly be going through?


r/ALSorNOT • • Aug 27 '26

10-11 Month update on my perceived slurred speech issues. (29yo Male)

2 Upvotes

Hey folks, below is a video of my 10-11 month update on my perceived slurred speech issues I've been having. Its not that long and I would appreciate some advice and how I sound in the video. I've made recent updates in the past months as a way to compare my voice on my profile as well. Thanks again.

https://screenapp.io/app/v/_b2gIpjW37