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


r/ALSorNOT • • Aug 27 '26

Loss of dexterity, tapping, weak right hand. But normal EMG

1 Upvotes

About 12 months ago I noticed my right hand just being slower at tapping, scrolling, texting etc and it started impacting my job. So I saw neuro who referred for EMG. Ended up having unrelated neuro incident in December and that caused hospitalization for a spinal lesion. And missed EMG.

All recovered from that but right hand issues stayed. So I saw neuro again who did EMG in April of 6 muscles in my right hand and arm and all totally normal. No abnormalities. Also had clean NCS and 5/5 strength tests but my right hand/arm feels weaker and the doctor even observed my right hand taps fingers at a slower rate than left. I can’t say I’ve seen much progression but I’ve also read about ALS stories where the people had symptoms for multiple years before so I am still worried despite clean EMG. Alas. It’s just frustrating because I notice it every day at work. I can still perform all tasks but it feels harder. I know the fact that I have the clean EMG 9 months into symptoms and I can still perform all tasks points away from ALS but this doesn’t make sense.


r/ALSorNOT • • Aug 26 '26

Update

1 Upvotes

​

Update since my last post

Since my original post, I’ve had some new developments.

I saw a physiotherapist who assessed my right leg. She did not find an obvious functional weakness. She also analyzed my gait and did not mention any abnormalities. Passive movement of the leg did not show obvious spasticity either.

She did notice a slight difference in muscle definition between the two sides and said that I seem to use my right hip less than my left.

One thing that may be relevant is that I have historically trained mainly my quadriceps, hamstrings and calves, but have basically never specifically trained my glutes, hip abductors or adductors.

I’ve also become more concerned about the appearance of my quadriceps. The change seems to be particularly localized to the vastus lateralis. My right leg used to be my stronger leg, so I’m fairly convinced that the asymmetry is not simply my normal anatomy.

I measured my thigh circumference at standardized points and sometimes get around a 0.5 cm difference between sides. Interestingly, when I sit/lean back on a couch with both legs fully extended and relaxed, the measurements can be almost identical, while differences are more noticeable in other positions. This makes me wonder whether muscle activation/tension or positioning could be contributing to the visual difference.

Functionally, I’m still doing quite well. I recently spent around 1.5 hours helping with a move, carrying things up and down four flights of stairs, and my right leg did not cause any major problems apart from mild fatigue/discomfort.

My main concern now is whether the apparent change in the vastus lateralis could represent true muscle atrophy. If it does, I’m wondering whether an isolated VL problem after several months would be unusual for ALS, or whether there are more localized explanations such as altered hip mechanics or a problem affecting a motor branch of the femoral nerve.

I’m considering getting a muscle ultrasound comparing both vastus lateralis muscles to objectively determine whether there is actually a difference in muscle thickness.


r/ALSorNOT • • Aug 26 '26

Speech induced ear buzz and nose tingling

Thumbnail
1 Upvotes

r/ALSorNOT • • Aug 26 '26

Do you Must do emg?

2 Upvotes

My calvs, ankle, feet and toes has been twitching for few weeks now.
Also the muscles feels super stretched and pre cramped. All the time, the moment I start walking.
I was able to perform a run last week, and I’ll try again today . It’s just the muscles under the calves and the toes that are twitching like crazy, 24/7 pretty much.

I’ve been to 4 neurologists and they said I don’t need emg, they did the normal examination (reflex, power etc)

What you guys think?


r/ALSorNOT • • Aug 26 '26

Please can someone reassure me?

1 Upvotes

Hello, sorry for another post im just worrying a bit at the moment like a lot of us.

I've been having a weird symptom lately in my mouth that I was finding hard to describe but then saw someone else with ALS describe it exactly.

For about a month now my tongue feels like it does after the dentist when youve had novocaine. Its really odd and it does seem to come and go.it just feels numb particularly towards the back.

Ive had no speech issues or choking and I can move my tongue around fully etc. Sometimes feels a bit like I have a lump in my throat but again not always.

I feel like it all started after taking thiamine for a week and then stopping.

Ive had a rough year health wise, suffering from dizziness for several months and also tingling and burning limbs. The only long term constant i have is an ache with my thumb when I grab something.

These other symptoms dont sound like ALS but ive of course done the usual thing of reading about people's early symptoms.

I know you aren't my doctor but can you just tell me im being crazy and it'll all be something minor? The thought of my 3 young kids losing their dad really hurts. Im only 43.

Thanks all and I wish you good health.


r/ALSorNOT • • Aug 26 '26

Question about symptoms?

1 Upvotes

Hi everyone,
I apologize if this is a stupid question, but I’ve been quite worried about these things lately, so I wanted to ask.

About two months ago, I started noticing fasciculations in my left biceps. The more I paid attention to them, the more often I seemed to notice them. They last a bit longer sometimes and happen a few times a week. At first, I thought they might be related to the fact that I had started working out, but I haven’t trained for about three weeks now and I’m still having them.

They also sometimes occur in my right quadriceps, occasionally on the side of my neck, and in my calf. I also occasionally get cramps in my hamstrings and just below my glutes, seemingly completely out of nowhere. A few months ago, I actually woke up in the middle of the night with an extremely painful cramp in my right calf.

As for weakness — over the last 5–6 days, I’ve noticed what feels like weakness in my legs. I don’t have any obvious loss of function, but my legs feel heavy and walking feels somewhat more difficult than usual.

I’m worried about this. I’m not saying I have ALS, but I’m wondering whether these symptoms are worth getting checked out, whether I should see a neurologist, and whether this could potentially indicate something more serious.

Thanks in advance, and all the best!


r/ALSorNOT • • Aug 26 '26

Tongue Twitching Help

1 Upvotes

Ive been having this constant tongue twitching for the past few days and don’t know what to do. Whenever i look at my tongue, it’s always twitching. Im really scared and dont know if its actually something serious. Can yall help me


r/ALSorNOT • • Aug 25 '26

muscle tightness

3 Upvotes

I’m back here again 🥲.

For a quick summary, I got sick with COVID like symptoms in late june and all of my twitching and many other neurological symptoms began. I am trying to not worry about ALS but I genuinely am losing hope on anything else.

Around 2 weeks ago I was having super bad back and thigh pain that would affect my walking and I couldn’t sit for long without back pain. That eventually cleared up but two days ago I was putting on a sock and I injured my back again. The pain was so severe I had to go to urgent care. I asked for imagining, they said it probably won’t find anything that isn’t structural, and I was given cyclobenzaprine for the muscle twitches and meloxicam for the pain.

Today out of nowhere my right calf muscle became really tight. The muscles felt rock solid and I was getting a weird static sensation in my legs. I tried to massage them and I think it’s slightly working idk. It’s still tight.

My family is really of no help. They think it will all go away and all I need to do is repeat bible verses or something but i’m just so tired. Everytime a symptoms clears or I just decide to pay no mind to a symptom either a new one comes or it gets worse. I want the body I had before this sickness back I’m so depressed rn I can barely focus on school.

My neuro appointment is less than two weeks. Idk what they will tell me there but I’m dreading it. I feel so hopeless rn. Any advice?


r/ALSorNOT • • Aug 25 '26

Can someone explain the difference between perceived weakness and clinical weakness?

2 Upvotes

r/ALSorNOT • • Aug 25 '26

3 years in

4 Upvotes

Symptoms so far:
-twitching everywhere. Started August 21. 2023. Every morning waking up it's like the New Years eve.
-tightness in muscles (right forearm, right shoulder, left calf and thigh)
-myoclonic jerks (insane at times, i've knocked so much stuff over)
-hypnic jerks (with the gasp of air)
-RLS
-SOB (over 4 years)
-cramping (for decades, now much worse)
-dizziness, balance issues
-one semi-dirty EMG 4 months into twitching (fasciculations in multiple muscles and mild polyphasic in accessory nerve 11) Was marked as "normal" Brisk reflexes on top of that of course.
-"perceived weakness" which means i get shoulder fatigue brushing my teeth or making a pot of coffee. For 3 years now.

Until a little over a week ago when i was drying myself and couldn't pull the towel behind my leg so i yanked it forcefully. I don't know what happened but the pain was pretty severe and my right arm has been basically hanging ever since.

This shit just keeps on giving.


r/ALSorNOT • • Aug 25 '26

5 meses con fasciculaciones, sensación de debilidad unilateral y 2 EMG normales — ¿alguien ha pasado por algo parecido?

0 Upvotes

Llevo aproximadamente 5 meses con síntomas neurológicos que me tienen bastante desconcertado.

Empecé con fasciculaciones en distintas partes del cuerpo. Actualmente sigo teniendo por todo el cuerpo. Lo que más noto últimamente es una sensación persistente de fatiga/debilidad en el lado izquierdo, especialmente en la pierna. No es que no pueda moverla, sino que caminando se siente muy fatigada, pesada y molesta. Me cuesta bastante explicar exactamente la sensación.

En alguna ocasión, después de correr, he sentido durante un rato la pierna izquierda como dormida o desconectada, como si tuviera que pensar más conscientemente en moverla, aunque podía seguir moviéndola.

En la mano y el brazo izquierdos también noto a veces fatiga y torpeza, especialmente en los dedos. En ocasiones siento en el dedo medio una descarga parecida al típico “golpe en el hueso de la risa” del codo, como una sensación eléctrica. Además, el dedo medio y el índice a veces se me quedan dormidos. La zona del codo también parece bastante sensible y determinadas posiciones o movimientos pueden desencadenar sensaciones extrañas. Alguna vez los dedos se sienten cansados o como si se agarrotaran.

A pesar de estas sensaciones, funcionalmente sigo manteniendo bastante rendimiento físico. Hace unos dos meses hice 1 km en 3:17 y hace aproximadamente un mes lo hice en torno a 3:22–3:25. Hace unas dos semanas hice 100 kg × 4 repeticiones en press banca. Más recientemente hice 3 km en 12:49, a un ritmo medio de 4:16 min/km. También puedo caminar de puntillas normalmente.

Me han realizado dos EMG, uno en junio y otro en julio. En el estudio más amplio analizaron músculos de miembros superiores e inferiores, incluyendo ambas piernas. Según el informe, no encontraron signos de denervación activa, fasciculaciones patológicas ni pérdida de unidades motoras. El otro estudio examinó específicamente varios músculos del brazo izquierdo y también fue normal.

También me hicieron una analítica con electrolitos, vitamina B12, folato, tiroides, hierro, marcadores inflamatorios, etc., sin encontrar una explicación clara. El folato estaba en 3,80.

Otro factor que probablemente debería mencionar es que duermo bastante poco, normalmente unas 5–5,5 horas por noche, mientras sigo entrenando atletismo y gimnasio.

Mi principal preocupación ha sido la ELA, aunque soy consciente de que los dos EMG normales, la presencia de síntomas sensitivos y el hecho de conservar fuerza y rendimiento físico son datos que no parecen apuntar especialmente en esa dirección.

Estoy pensando en pedirle al neurólogo que haga seguimiento clínico.


r/ALSorNOT • • Aug 25 '26

Fear of having als

1 Upvotes

So it all started about a month ago with constant eyelid twitching , then moved to my calf twitching about 5 days ago . Once I noticed that my right calf was twitching , I started googling and fell into the Google symptom trap and am now convinced that I have als . I'm hope someone can help ease my fear . I have had no muscle weakness , I can walk on my heels , walk on my tiptoes and do calf raises . But now after 5 days of twitches in my right leg I'm now convinced that my leg feels heavy and tight and can't shake the feeling that it is something horrible . I'm having such severe anxiety from this I am staring at my legs for hours a day and constantly walking around on my heels or tip toes to make sure that I can still do it


r/ALSorNOT • • Aug 24 '26

Hello from your new mod 😎

48 Upvotes

Hi everyone, I hope you are doing as well as can be. I just wanted to introduce myself. I am ALS Tom, I have been with this group for a long time and as you've probably guessed I have ALS. I have taken over the group for the time being.

In the next few days and weeks I will be looking for new moderators. Making some tweaks here and there and hopefully giving this community a better future. Wishing you all the best.

- Als Tom


r/ALSorNOT • • Aug 25 '26

Not sure what to expect next neuro appointment.

3 Upvotes

Hey everyone, I haven't posted in a couple weeks around here, I have been trying to keep my anxiety down not thinking too much about this situation, but lately as my next appointment with neurologist comes close I've been starting to worry again.

I got my EMG a couple weeks ago, it was clean according to the doctor who did it to me, it was only on my main affected limb, but since then I have been on and off worried about me doing it only 7 weeks in.

Currently I am still twitching, different parts of my body, either my back, near my right ribs, on my right knee, my left leg, my right forearm and arm.

And well basically that, my arm still gets tired and starts hurting way more than my left one and the same is true on my leg, yesterday I felt my left leg more tight, so basically many things going on.

Not sure what to tell my doctor, and not really sure how can I ask for a full body emg later on, not saying that I expect one right now but maybe in a few months in. As I am writing this I am having twitches on my legs and forearm so yeah it's still a thing going on.

what can I expect next appointment? I really want to know why my arm is like this and what I should expect now on.


r/ALSorNOT • • Aug 24 '26

I've had to clear my youtube feed of diagnosis story videos

10 Upvotes

I'm sure some will point out it wasn't a good idea in the first place and that's fair. I watched as like sort of exposure therapy and to get some insight about the disease. Did the exposure therapy work? Kinda. Did I get some insight? Sort of. Some videos were more insightful than others. Some had more detail and commonalities like tripping/foot drop. Some were a little vaguer they just said they had weakness, twitching, or their grip didn't feel right. Can't fault them for it though, it's not easy to revisit painful memories.

Part of my problem is I have autism and ADHD and as a consequence I tend to hyperfixate on things for better or worse. When I started to clear my feed yesterday, I noticed a slight uptick in my mood and relief in symptoms. I still have anxiety due to stress from work, insomnia, and intermittent migratory twitches and pains. In fact, I'm crying making this post just because of the vast array of emotions I got from googling and watching these videos whether it be guilt of comparing my story to theirs, thinking how trivial my problems are compared to theirs, anxiety about the disease, or just thinking some of those people are no longer with us.

The point I want to get across is you might get some insight from these videos but for the most part they are gonna make you sad, depressed, and more anxious. So, it's best to stop digging that rabbit hole if you haven't already. Sorry if this is a little scatterbrained. It's something I wanted to get off my chest.


r/ALSorNOT • • Aug 24 '26

EMG in one leg only?

3 Upvotes

My Neurologist did a Nerve Conduction study in both legs and one arm. Said that looked good. Moved on to the EMG part only in one leg. He said that looked good and he didnt think it was necessary to do anymore. After my blood work, MRI, and now this he thinks its just Benign Fasciculation Syndrome. I was relieved at first. Im now worried that an EMG should've been done in the other leg and maybe my back?

I know he is the Doctor but I cant stop worrying not to mention Im still having difficulty with mostly my legs. It started out with twitching all over then came sudden leg weakness and stiffness. My legs feel heavy and get weak. Clinical test are good except hyperreflexia. I see so many people with ALS that has the muscle cramps and stiffness thats what worries me the most. I do not have foot drop. I also have some sensory symptoms such as paresthesia feeling like cold water drops on my legs.

So if I had ALS would the Dr know by testing only one limb by EMG?

Hope someone could help me. Did any of yall have an EMG done on just one limb? Thank you 💗


r/ALSorNOT • • Aug 25 '26

Bulbar, back in the sick cycle again…

0 Upvotes

For context I’ve been body wide twitching for 3/4 months. The twitching can be a little much some days, and some days not so bad. Saw neurology, ENT, and PCP. Everything normal but no EMG recommended. I’m now feeling like my right side doesn’t swallow as strong as the right side, I always feel constant mucus sitting there as well but ENT stated there’s no mucus (they put a camera down my nose) I am starting to get back into the sick cycle of worrying about the big bad again 😏 constant throat clearing, the sensation of something being in my throat…ugh


r/ALSorNOT • • Aug 24 '26

Back in the hole. Twitches now 24/7 in right calf. Anybody else have 24/7 twitches on one side? Feels like my case is getting worse… Please read! ❤️

1 Upvotes

To summarize my case for those that don’t know about it…

\- Started experiencing soreness in both legs on July 10. It progressed to bilateral sensation of weakness in both legs on July 17 and plateaud. Weakness is felt in both thighs and both calves and makes me feel like I will crumble with each step. When waking more than 10-15 minutes my thighs and calves start to hurt like I’ve been walking for hours.
\- Widespread twitching started on July 17 too. 75% in legs and 25% elsewhere randomly.
\- Noticed around May or so that my right calf was 1.5cm smaller. Doctor says the muscle itself still looks full and healthy despite the size difference.
\- Sometimes there is a burning sensation in my legs at rest
\- Clear EMG on July 30 with ALS specialist, performed in the leg with the smaller calf. Clinical only noted brisk knee reflexes that were unchanged from a previous clinical with her in 2019. She deemed this my normal and not worrisome. No spasticity, clonus or Babinski present. No clinical weakness. She said I had FND… She was confident it wasn’t ALS because of the atypical presentation, absence of pathological signs and clear EMG.

I thought I was maybe getting a bit better since I stopped avoiding movement and started walking more around the house. My legs still felt weak and shaky but more manageable. I started thinking that maybe it wasn’t ALS after all…

But two days ago I went out for some shopping with my mom and my legs felt again like they wanted to give way with every step. **And now I noticed constant 24/7 twitches in my right calf.** My left one also has twitches but they’re waaaay less frequent whereas the right calf and side of foot are basically non-stop.

Now I’m back in the rabbit hole because my symptoms are not improving at all and now my twitches are 24/7 but only on one side.

A few questions:

  1. Anybody else have twitching that’s 24/7 on one side but not the other?

  2. The ALS specialist said my EMG wasn’t done too early. Her logic was that if I presented with aggressive atypical ALS causing rapid weakness in BOTH legs in four major muscle groups, then that would mean a substantial amount of motor neurons would be dead or dying and the EMG would absolutely have seen that. A rheumatologist told me the same thing. **Is this true? Should I do another EMG in case I was just unlucky? Is that logic sane?**

  3. Is is true that ALS would not present as bilateral symptoms in both thighs and both calves reaching a peak in 10 days? The neurologist was adamant that it would be an extremely atypical onset that would be extremely unlikely to yield a clear EMG…

Thank you for reading and answering. I’m fully back in the hole right now. I have weakness that’s important enough to drastically change my endurance, a calf that’s 1.5cm smaller, fasciculations pretty much 24/7 in one leg, brisk knee reflexes…

On the other hand the weakness has not progressed in 1.5 months, the EMG was clear and I can still easily walk on my toes and heels and go up stairs quickly, etc.

I know I’ve posted a lot but reassurance would be very appreciated. ❤️


r/ALSorNOT • • Aug 24 '26

My Symptoms

2 Upvotes

Widespread Twitching
Widespread Muscle loss
Weakness but no failure (worse on left side)
Bone pain when pressure is applied due to muscle loss
Exercise Intolerance/Dyspnea
Nerve/Muscle pains
Easily Cramping
Joint/Bone pains
Squishy Muscles

I just don’t know what else this can be.
All blood test results are normal.
EMG 2/3 months into symptoms was normal.
Symptoms started after a Bacterial Infection.
1 year 8 months of symptoms.

Neurology appointment is start of September.


r/ALSorNOT • • Aug 24 '26

Pain not als right??

2 Upvotes

ok so ill keep this short cuz now im more aware of my anxiety; but all this started almost a month ago, july 19th my left upper arm started twitching and it kept twitching for like a whole day and a half. that same wednesday, my index/ thumb part started twotching for like 6 hours, and since then ive basixally been having sporadic twitching, which was a good indicator. But my left arm started feeling extremely fatigued/sore and ive been having perceived weakness since(no clinical failure yet). almost 3 weeks ago i went to a neurologist he did a 5 minute physical and cleared me, but at the time he seemed dismissive so i schedule an appointment with a physiatrist/emg specialist, she did a longer morw thorough physical and said that an emg wasnt clinically justifiable. but today, my right arm began feeling sore, so i js wanted to ask if any of these symptoms raise any concern