r/ALSorNOT

EMG is clean. All my bloodwork is fine. I have MS and that’s it.

I’m done letting my brain convince me that something is wrong. So… Goodbye, farewell, I am deleting Reddit.

I hope everyone here finds answers, treatment, peace and happiness. Anxiety is a bitch

22F. Have had fasciculations for almost 3 years, so that's unrelated but I thought I'd make it known that I've had ALS anxiety for a while.

Swallowing issues for maybe about a year or a little more. It scared me for sure but I ignored it until recently I feel like I've noticed it's gotten worse. By swallowing issues, I mean oropharyngeal dysphagia, where I have trouble initiating a swallow. It feels like my throat just can't do it sometimes. I otherwise have no symptoms except for the occasional tongue fasciculation but I associate that with the other fasciculations that happen on my body. I also want to add that I can swallow liquids perfectly fine, but solids are where I come to have an issue.

I've tried relaxing but I just really can't seem to. Will go to the doctor soon. Just wanted to know what other people took from this.

Hi I am an indian guy 26 years old really worrued about having als i have been having twitching for years in my calves my upper back my hips my arms and sometimes my face lips eyes and feet too now thats not just the only thing i have clubbed finger nails and i think my palm is mushier and denty on the left compared to the right hand also feeling the same that my leg is smaller calf on the left compared to right now the problem is that whenever i ride a bike my left hip and hamstring cramp up in a certain specific position whereas when i walk i get shooting pain in my left foot (i think it is all muscle loss) i can still walk workout talk etc but i just feel not as good as before

Also have low vit d, low vit b12 and two of my brain mri have shown periventricular white matter lesions

Please help me out as this is making me beyond depressed i cant function

So the past two weeks I’ve been occasionally slurring my words or stumbling on them. But majority of the time im able to correct it after messing it up the first time. Im scared can someone give me some information

24:7 non stop!!! Is this a sign of Als? I’m terrified

Desperately need some kind of reassurance because I’m freaking out. I honestly can’t remember whether it started in my upper or lower body but unless my symptoms were extremely subtle I really started to feel them about 5 maybe 6 weeks ago.

Unstable when I walk and weak around my lower legs but no foot drop observed. They fatigue easy and I definitely can’t run at my top speed no matter how hard I push.

As for my upper body hands and forearms feel weaker. Grip is definitely difficult and lots of clumsiness and it feels as though it’s getting worse. For example little tasks like opening my contact lens case, using utensils, picking up plates and bowls, etc. In the last couple days I noticed real muscle atrophy in my biceps. First in the right arm then the next day in the left. A gap in the muscle.

I go to the gym 6 days a week and I’ve been using that as a barometer to test my muscle strength/weakness and I haven’t noticed much weakness when lifting but I have noticed somewhat of a decrease in the muscle stimulus I’m getting on the right side of my body.

Whether it’s from stress or progressing symptoms I do feel soreness in the tongue also tightness in my jaw/cheeks/teeth. Swallowing and drinking doesn’t feel too off as does speaking except for one time when I caught myself stuttering.

Muscle twitches and fasciculations are brief and noticed all over my body. Affecting lower and upper body relatively frequently and now every once in a while in my face with the new jaw symptoms I mentioned.

I had an appointment with my neurologist scheduled for tomorrow but of course I get a call it had to be rescheduled to December. I have a primary care appointment on Friday 8/21.

The only crutch I’m holding on to is that I’m only 26 (no known family history either) and it’d be so rare to have ALS at my age. But I’m sure the others who were diagnosed in my age group thought the same thing. I understand Googling symptoms is the worst thing you can do but it genuinely seems all of my symptoms along with it progressing the way it is that I’m developing ALS. I certainly have no doubt there’s something wrong with my motor neurons.

Edit - Tongue feels sore and the legs + arms weakness is simultaneously worsening as of today

Hello! I have had some muscle twitching all over the body for 3 months (sometimes they are better sometimes they are worse) and for the last month I started feeling the need to constantly swallow (like every 15-30 seconds) because it feels like my mouth is flooding with saliva and I fear it may be because muscles involved in swallowing are weaker, sometimes I need to swallow foods 2-3 times to clear my throat and I can’t really dry swallow, just only when I am collecting saliva. Is it possible to be ALS or I just have anxiety or OCD? I am a 20 years old male

https://www.reddit.com/r/BFS/s/fk1xhXFrCb

Since this original post I have had a progression of symptoms which are concerning. I have been to another neuro that performed another emg/ncs and clinical exam and stated that there’s no way imaginable I could have a serious disease with what she has assessed especially being 30y old.

Symptoms that I have ongoing that concern me but she didn’t care to listen or link to anything serious.
I Can’t put on weight. Have been eating excessive amounts of food for 3 months and have not gained a kg. I track everything I eat in terms of calories too which is how I know. My forearms get strained really easily by doing difficult hands on tasks but nothing out of the ordinary that you’d expect excessive pain. I wake up nearly every night with numb hands on both arms. If I go for a walk my feet go numb or start burning. My fasciculations are constant like many of you have in calves but mine are in my forearms, calves thighs, triceps and back. In my case I’m starting to believe there is the chance of operator or unskilled neurologists performing tests and not listening to presenting symptoms.

Should I get a 3rd opinion from a neuromuscular specialist give the progression of my symptoms? It’s been 3.5 months since sudden outburst of full body fasciculations and 6 months since fascics started in my calves.

I haven’t posted here in a while because I’ve been trying different avenues on getting better. My main symptoms was I felt off in a little bit weak in March 2025. I was diagnosed with Hashimoto’s from there. I started levothyroxine August 2025 I started noticing muscle twitches and even more weakness. I ended up getting a clean EMG in October 2025 and then in November 2025 from two separate neurologist, the first one showed fasciculations in my lower extremities. The second one was normal. Both nerve conductive studies were normal. I’ve been dealing with full body weakness since September 2025 we are now in August 2026. I’m so weak I’ve been out of work because of it my legs get super stiff. My quads are very weak. My shoulders are weak, and I experience on and off like muscle twitching, flareups flare, and I’ll notice more weakness in that area. When these twitches initially happened, they were my thighs. My legs have overall gotten a lot weaker in a year. I’ve been less mobile. I feel like my knees are always collapsing. My neurologist have been trying to treat me for a variant of unknown significance in the SC4NA Gene, which is a form of Periodic Paralysis which he thought was paramyotonia finding out from a genetics specialist that this variant is only 5% pathogenic and I’ve been treated with Diamox and doesn’t really seem to show any advantages. I went to the university of Penn med and saw a Dr Lauren Elman who is the MDA clinic chairperson and was the head of the ALS clinic for a while at the university of Pennsylvania along with a professor of neurology . We had about an 80 minute chat about everything going on. I passed a clinical. I was able to squat get back up walk on my heels and toes strengthen my hands she said my muscle bulk was normal. My reflexes were normal little brisk on my knees my walk was normal. My tongue was strong. Showed her the two previous EMGs that were done and she told me hand to God. She does not think I have ALS. That I do not have ALS after a year I would show worse symptoms or at least a clinical weakness or clinical failure. She said I had peripheral nerve hyperexcitability syndrome. With a root cause of possibly from Hashimoto’s back in March 2025, causing an idiopathic syndrome. She really only prescribed tonic water at night about 7 ounces and to try to start PT. Since then, I have felt extreme amount of weakness definitely in my legs if I start driving, and I hold my arm up too long on a steering wheel, my arm can hurt for a week the shoulder could feel weak for a week. She didn’t think it was medically necessary for another EMG. She said I show no signs of atrophy and my CK levels have always been in a low normal like 60 or 70. I’m very limited on what I can do. I’m just tired easily walking and I feel internal vibrations. I get tremors sometimes, but the biggest thing is the weakness mainly in like the biceps and in the thighs I’ve had work ups like you wouldn’t believe I’ve seen every single doctor. You can imagine besides a gynecologist and I’m a male. How do I get this fear out of my head I feel like I’m just waiting for a clinical failure. I’m completely exhausted almost all the time. Should I demand another EMG? I’ve noticed a lot of younger males especially that were physically active Seem to progress a lot slower, and don’t show clinical weakness for a while. Please if anyone has any insight, please let me know.

I have muscle twitching on my leg for 2 weeks and just got blood test 1507 for cpk. Am I dying? Is this als? Please help please

33M, 6’2, 180 lbs, non-smoker, and no family history of brain cancer or neurological disorders.

Last Thursday, my left upper eyelid started twitching. I originally thought it was probably from lack of sleep, stress, and anxiety since I had been under a tight work deadline that I finished late Wednesday night. The twitch lasts for several seconds, is a visible ripple/twitch under the skin, and occurs throughout the day (although closing my eye makes it maybe a little less intense).

The twitching continued and I’ve progressively become more and more anxious about it (I suffer from health anxiety and had been doing significantly better until this happened). On Monday, I woke up and noticed that my left jaw felt really tight/tense. It almost felt like I was having spasms/quivering there but I didn’t see anything when looking at the mirror. On Monday night, I was looking at my face (and ironically was thinking that the eyelid was happening a little less frequently) and noticed a small and very brief ripple (more like spasm) in my cheek on the same side.

Yesterday (Tuesday) and today I’ve continued to notice the twitches in both my eyelid and cheek (maybe jaw as well; jaw and cheek area feel really tense). The eyelid is definitely more of a twitch and lasts longer whereas the cheek looks like a brief spasm and is a lot shorter in duration. Sometimes they occur at the same time or in close proximity but other times it’s just one or the other. No numbness, tingling, etc. can fully smile and open mouth. Face isn’t drooping.

I have an appointment Friday late afternoon with my PCP and am completely freaking out that I have a brain tumor or ALS. My wife thinks it’s probably anxiety and stress along with me being hyperfocused on it. I also came across hemifacial spasm but that seems like it generally takes much longer to spread than what I’m experiencing.

Any thoughts on what’s going on? TIA!

Edit: in case it’s relevant, I did see an ophthalmologist and have an eye exam in June and he took a bunch of pics of eye and I recall him saying that my optic nerves looked fine

Second edit: added a comment that includes a video of the cheek ripple/spasm (not sure why Reddit zoomed it further in)

Cerco testimonianze che come primo sintomo e stata atrofia muscolare.

I’d just like to say that I think this subreddit needs more moderation. I don’t think I’ve seen the original moderator posting much lately and I’m not sure how active you are these days, but this subreddit seems to be getting out of hand lately. There are specific commenters who are mocking posters over and over again and acting as if they are experts when they are simply other regular people on here with their own issues.

On the opposite end of the spectrum, I’ve also noticed an uptick in people posting who only have twitching. I wonder if there should be a requirement to have at least one additional symptom beyond twitching to post?

Perhaps having more than a single moderator to handle such a big task would be helpful.

I’m literally in panic, these fasciculation don’t stop for the last two weeks I’ve been to 3 neurologists but they didn’t see it on the test but now I see it.. can’t stop feeling it and the twitching in the foot don’t stop

C'est révoltant de regarder ça. Et que l'ami ait ou non la SLA, cela ne change rien au fait que c'est un scandale !

Pendant que les gouvernements réussissent à mobiliser **des dizaines de milliards de dollars pour des armements (les États-Unis ont annoncé la production de 23 milliards de missiles tomahawk),** il existe des recherches qui pourraient sauver des milliers de vies, simplement en attendant de l'argent pour continuer.

Aujourd'hui, nous avons un essai de **phase 3 du PrimeC autorisé par la FDA**, mais dont le début dépend d'un financement que l'entreprise elle-même admet ne pas avoir encore réussi à assurer. Nous avons le **NurOwn**, qui prépare une autre grande étude sur la SLA, tandis que l'entreprise a rapporté environ **22 000 $ en liquidités et 187 000 $ en liquidités restreintes**, face à environ **12,4 millions $ de passifs courants**.

Pensez à l'absurdité de cette proportion.

Je ne dis pas que le financement de la recherche sur la SLA est la responsabilité exclusive des États-Unis. Bien au contraire. **Cela devrait être une responsabilité mondiale.**

Pourquoi ne pas créer un grand **consortium international contre la SLA**, réunissant gouvernements, universités, laboratoires, entreprises pharmaceutiques, centres de recherche, intelligence artificielle, bases de données et patients, partageant les découvertes au lieu que chaque groupe travaille de manière isolée et se dispute les ressources ?

Imaginez **100 milliards de dollars par an pendant dix ans** dirigés de manière coordonnée pour comprendre et combattre la SLA : biologie du TDP-43, génétique, régénération des neurones moteurs, protection de la jonction neuromusculaire, thérapie génique, ASOs, édition génétique, cellules, immunologie, biomarqueurs, intelligence artificielle, découverte de médicaments et essais cliniques adaptatifs se déroulant simultanément dans des dizaines de pays.

Ce serait **1 trillion de dollars en dix ans** pour affronter l'une des maladies les plus cruelles qui existent.

Je ne peux pas affirmer scientifiquement que 100 milliards de dollars par an garantiraient un remède ou résoudraient la SLA en dix ans. Personne ne peut. Mais il est difficile d'imaginer qu'une mobilisation scientifique d'une telle ampleur ne réduirait pas brutalement les délais, ne supprimerait pas les goulets d'étranglement financiers et permettrait de tester en quelques années ce qui, au rythme actuel, pourrait prendre des décennies.

Ce qui me révolte, c'est justement cela : **il ne manque pas d'idées. Il ne manque pas de chercheurs. Il ne manque pas de candidats thérapeutiques. Dans certains cas, il manque même d'argent pour faire fonctionner une étude déjà autorisée.**

L'humanité parvient à trouver des centaines de milliards lorsqu'elle décide qu'une chose est une priorité.

Alors peut-être que la question n'est pas seulement :

**"Quand allons-nous trouver un moyen de contrôler ou de guérir la SLA ?"**

Peut-être est-ce aussi :

**"Combien de souffrance sommes-nous prêts à accepter pendant que nous décidons que ce n'est pas encore une priorité suffisante ?"**

Si le monde traitait la SLA comme une mission scientifique mondiale — comme il a traité les guerres, la course spatiale, les pandémies et les grands projets technologiques — peut-être n’aurions-nous pas besoin de demander à un seul pays de résoudre le problème.

Il suffirait que **tout le monde résolve ensemble**.

Parce que pour ceux qui perdent en mouvements en attendant, **50 ans ce n'est pas l'avenir. C'est trop tard. C'est une catastrophe, savoir que nous allons laisser nos enfants dans ce monde si horrible, surtout les miens qui ont quelques mois !**

Hi all, I have been dealing with progressive symptoms for about 4 weeks now. I had a neurologist appointment about 2 weeks ago and had normal results.

My symptoms are very weird. My whole right arm feels like it's losing muscle, and that it is straining harder than my left during any workout. My strength still matches. But my right arm just always feels "off" especially when activating the muscles or working out. I am worried this could be progression, it has been 4 weeks and it is definitely getting worse.

So I'm around 5 months on from first noticing constant weakness in my limbs and now there's objective clinical weakness in my mouth and cheek muscles too.

So like water dribbles out of my mouth and I literally can't swish mouthwash to the far left side of my mouth anymore.

Thing is whilst my family says my voice is a bit hoarser and quieter than normal, it definitely isn't slurred. It might sound a bit nasal but they say they can't hear it.

Is this consistent with ALS? As in can ALS spread to the bulbar area whilst initially only causing weakness in the cheek and mouth muscles without causing any speech slurring or tongue weakness?

Hello again all. As the title says opinion appointment is this week. I will leave a link for those who don't recall who I'm as n have been spending less time on reddit because the anxiety of having a bad EMG numerous doctor visits/procedures and the bs US healthcare system has been straight hell..still declining but have had road bumps that has slowed down the process continued treatment to run out possible few other diseases

Very nervous about this appointment. Still declining unfortunately. Praying / hoping for it not to be this horrible disease but but at the same time you know if it is so, it's better to know.. how horrible to happen to say something like that huh?

Can I give a word of advice to you all? Enjoy your life enjoy your body because it's been as much time as possible with people cuz you just never freaking know. A year ago I was still picking things up, hell have you said issues with one on and now look at me. You have a good EMG take it from me just look at it as positive and just going to leave your life

https://www.reddit.com/r/ALSorNOT/s/PLOih5UEWg

https://www.reddit.com/r/ALSorNOT/s/pFVNf0rWwb

Hey everyone so I’ve been around here for 2 months now

I began twitching at the end of June and well I’ve been dealing with pain on arm when lifting things, basically tiredness and all of that

I had a EMG on my right arm 1 week ago, it was normal, but yeah so basically I’ve been trying to keep with my normal life, going to work and doing all the same things as before.

But, I’ve been still experiencing aches, today I went to the gym since 3 weeks ago when I noticed a ton of pain on my tricep. My pain on tricep is still there when working out, I am able to do exercise but it hurts a fucking lot. I had twitches on that arm as well last week.

Now, I also exercised my legs and I still have pain on my right calve muscle, it hurts the same way as the right tricep. I have waken up during these days with left arm fingers numbed, not sure if related to it.

I have been still anxious by not having gotten a full body EMG, but I’m trying to think positive.

By the way, the pain in muscles and right arm still happens even without going to the gym. They have been on my arm during this past month just by lifting heavy things during grocery shopping, and those things make my muscles tired and start with pain.

Is there a reason for those kinds of sharp pains? Are those related to BFS? I have noticed less twitching, but it still happens from time to time on the right leg or some other parts of the body.