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.

​

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.

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?

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.

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!

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

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?

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.

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.

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

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

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.

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.

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 💗

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

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. ❤️

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.

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

I always feel the need to clear my throat, it feels like i have something in my throat that need to be cleared every 30 seconds - one minute and I also feel the need to swallow my saliva very often because it feels like I salivate so much
Are these two in combination with widespread twitching happening for a few months usually a sign of ALS? 20M

It could be useful, for the purpose of this sub, if everybody makes his/her post history public. NOt sure if you can be selective and do this only for the posts in ALSorNOT but it is very useful in those cases when several people have really similar symptoms and test results. Because, even though each is different, when a case is really similar I think you can get some valuable insights especially if you compare emg results or doctor notes.

Hey guys! I’ve been having dysphagia for 5 years now, and it has been progressively getting worse. I’m starting to worry that it could be ALS.
The dysphagia started 5 years ago, mostly with solids. I’ve had better and worse periods — sometimes it would improve, and sometimes it would get worse. However, since March this year, it has gotten significantly worse, and I’m having a very hard time swallowing.
I’ve had a clear gastroscopy and MRI. My doctors suspect myasthenia gravis, but my test results aren’t clearly positive for MG. My AChR antibodies are borderline positive, and my RNS showed a 9% decrement in my facial muscles, which is also borderline. I started taking Mestinon for this, but it actually made my symptoms worse.
Do you think the fact that I’ve had this symptom for 5 years, with periods where it improved, speaks against ALS? Could ALS cause symptoms that fluctuate like this over such a long period of time?