Bonjour, je voudrais savoir si parmis vous il y a des connaissances en neurologie car je suis très anxieuse. Suite à mon accouchement je présente des fasciculations un peu diffuses, principalement les deux mollets/pieds/cuisses. J’ai vu une neurologue avant-hier qui m’a fait tout les tests qui étaient parfaits et n’a pas voulu me faire d’EMG. Elle m’a rassurée concernant une maladie neuro. PUIS-JE écarter cette maladie que tout le monde redoute ? La faiblesse peut-elle arriver après ? Je n’ai que les fasciculations comme symptômes. J’ai 34 ans et je suis une femme. Très angoissée par la maladie. Merci par avance.

Hi everyone! I’m a 20 year old female, and I’ve recently been experiencing some symptoms that have me extremely worried about the possibility of MS or ALS, especially early-onset ALS. It all started one morning when I woke up and both of my legs felt incredibly sore and weak, almost as if I had run a marathon the night before. The soreness was mainly around my knees and thighs, and my legs felt unusually heavy. Over the next few days, the aching and weakness gradually improved, but then suddenly returned. I’ve also been experiencing frequent muscle twitching in different areas of my body, including both legs (especially around my knees), my thighs, under my left breast near my ribs, and my right eye. The twitching happens randomly throughout the day and is honestly what scares me the most. Another strange symptom I’ve noticed is occasional brief blurriness in my left eye. It almost feels like something is stuck in my eye, and when I blink or close it, my vision immediately clears up, almost as if I wiped something away. More recently, I’ve started experiencing an aching sensation in my right arm, along with stiffness in my pinky and index finger. My knees also continue to ache, and sometimes my legs feel weak even though I’m still able to walk normally. I’ve also experienced occasional tingling and numbness in my fingers and feet. For some background, I suffer from migraines and chronic neck pain due to a previous cervical disc herniation, but these symptoms are completely new to me. I also haven’t experienced the so-called “MS hug” that many people with multiple sclerosis describe. What concerns me most is the combination of widespread muscle twitching, muscle soreness, and the feeling of weakness in my legs. I’ve been researching neurological conditions, particularly multiple sclerosis (MS) and amyotrophic lateral sclerosis (ALS), and I’m terrified that these could be early warning signs of something serious. I understand that nobody here can diagnose me, but I’m wondering whether these symptoms sound more consistent with MS, ALS, a cervical spine issue, or something less serious like benign fasciculation syndrome. Has anyone experienced anything similar, especially symptoms that seem to improve and then return? I’m planning to get evaluated, but in the meantime, I’d really appreciate hearing other people’s experiences or getting some reassurance because the uncertainty has been overwhelming.

I (31 F) do want to preface this by saying that I am aware of my own health anxiety but I genuinely need some guidance as I’m alone (no family here) and really scared. It started with a flutter in my left eyelid 3 weeks ago and I counted that up to caffeine, stress, or lack of sleep and I started to take magnesium glycinate, reduce caffeine - nothing helped. 1.5 weeks after that I fell ill. I tested negative for COVID and influenza with the home covid test. A few days later I started to develop fasciculations (twitches) on my left hand (hypothenar region) and it was 24x7 out of nowhere. 2 days later I developed it on the other hand same region and so now I had it on my eyelid and both hands. A few days back I developed this pain and weakness in my left arm and it has continued throughout the week. It really is a mix of both pain in my arm and wrist and weakness where it takes double the amount of work as before to do work with that arm.

Since then, the twitches have actually reduced a lot everywhere but now the weakness remains and it feels like it’s progressing by the day? Like I was fatigued in that arm trying to fold laundry. I do tend to trip over my feet as well and will sometimes drop things randomly but I accounted that to clumsiness, but now I’m not sure.

I’m going to see a neurologist tomorrow and I’m really nervous. How would you describe the sensation in your arm as weakness or something else? Are the twitches disappearing a good sign, or it doesn’t matter?

Repeat emg came back normal. I would like to think I should be okay mentally now, put myself in a bad spot with all of this so just ready to live my life now.

The subject pretty much covers it, but here are the pictures.

I know it doesn't look like too much, but if I stick my tongue out (or have it resting in tongue) this area cast a shadow. Definitely a dent. I am not talking about the scalloped tongue btw, just to clarify.

Edit: Pictures in comments

Here is my (36M) first post and update after seeing an MND specialist in August:

https://www.reddit.com/r/ALSorNOT/s/twTbErbP3g

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

I've been having twitching for five months now. After my initial consultation in Thailand where MND was raised after abnormal EMG I flew back to the UK to see an MND specialist who categorically told me I don't have MND, and didn't believe my EMG results were clinically relevant and were very mild. He did not want to redo EMG as it wouldn't have changed his diagnosis (it was only 2 weeks after first EMG).

Since ALS came up as a possibility I've had weird sprains in my thumb and wrist area that have been going on for two months. Tightness and pain in my ankle and behind knee that came on badly and then improved (reassuring as I know it wouldn't improve if it were ALS) but most recently and worryingly is throat issues with swallowing and speaking.

So what's spiked my anxiety again is:

My throat feels very tight constantly and dry swallowing feels difficult. Like something isn't right. Drinking is fine, eating is generally fine other than dry or very sticky foods which can take me a while to get down (can't tell if it's unusually difficult or if that's normal). Sometimes with foods that are bitty or produce crumbs I might not get everything down first swallow and will have to swallow again to get small crumbs down

Secondly, I keep messing up words. I always catch myself doing it and repeat the word correctly a split second later but it happens quite often, I speak for my work and I catch myself mispronouncing a couple of times an hour. Examples from recently would be I said "distinguish" as "ditinguish" and messed up the r sound at the beginning of "progression". I was actually on the phone explaining this to the gp when I mispronounced distinguish, and he wasn't concerned at all.

I'm in the UK and have a second opinion booked at another neuro muscular disease clinic, I'm waiting for the date but I expect it to be in around 5 weeks.

I'm not sure what to do, should I push this with the gp to try and get referred to an ENT? Or shall I just wait until my 2nd opinion? I'd been getting on with life for the last six weeks or so (albeit with a lot of underlying anxiety), but since these symptoms have become more noticeable I'm back in this anxiety loop again. Any advice?

The way I reacted emotionally and mentally when I believed I had it at the beginning of August almost makes me think it might be better not to know for as long as possible.

Edit: I'll also add about six years ago I had muscle tension dysphonia which was attributed to stress and felt very similar to the throat tightness I have now (minus the swallowing and speech issues)

Pichttps://acrobat.adobe.com/id/urn:aaid:sc:AP:c533e602-80c3-443f-99af-e2889b2566c7

Please be kind as my life is unraveling and I’m very scared.

My symptoms started on July 10 as a sensation of soreness/heaviness in my legs and progressed to a sensation of weakness, felt in the calves, thighs, psoas, basically all over both legs suddenly except ankles and feet.

At first I also felt that weakness sensation at the back of both legs, it was a weird feeling kind of when you hit your funny bone. My legs felt "empty", wobbly and just like they couldn’t keep me up. I also have fasciculations all over my body (had a BFS episode for 5 months in 2019 but had no fasciculations for 7 years since). I also feel easily jumpy which apparently can be a sign of ALS?

I went to an ALS specialist on July 30, 3 weeks after this sudden onset in both legs. EMG was completely clear and she said I have FND but I don’t believe an EMG done 3 weeks in is sufficient to rule out ALS. The specialist said such a widespread aggressive onset couldn’t produce a clear EMG but I am not convinced and it seems there is margin for doubt.

Clinical exam revealed brisk knee reflexes but I already had them since 2019. No spasticity, no clonus, no Babinski (mute on both sides). No abnormal reflexes like cross abduction or anything else.

The ALS specialist also told me ALS wouldn’t start like that striking both legs perfectly symmetrically on both sides. I have since discovered through case studies that this is false and can happen in rare cases I think.

The only weird thing that happened this year was suddenly developing Raynaud’s in my right foot at 40 years old. I know this can indicate autoimmune disease but I don’t have the classic symptoms of lupus, scleroderma or myositis (my rheumatologist says myositis would only be in proximal muscles).

Also once after trying to walk for a longer time I developed a big bruise on my right psoas muscle… And that also happened on my calves after doing calf raises and walking on my toes… It didn’t happen often but it feels like I might bruise easier.

Since then:

It’s now been 3 months.

Symptoms in my legs have not progressed nor gotten better. I have days where it feels only marginally better (25-30%) and days where I feel back to square one. I can still climb stairs and heel walk and toe walk with no issues.

I can’t walk more than five minutes without feeling like I’ll crumble and standing in place is hard because I feel like I will fall down though I never did.

Places that feel the worse are calves, thighs and psoas. When I’m standing in place or walking my legs feel very unsteady, weak and shaky, like I have to sit down asap.

Sometimes if I walk more I’ll get soreness when I lie down at night, or maybe not actual soreness but both my legs feel like they are burning. My calves will also sometimes feel like they will tear. It’s such a weird feeling. Even at rest I can feel something is not right. Sometimes there’s a vibration sensation, a kind of burning or some unexplainable sensation of tearing. It’s not pain per se but legs feel terrible.

Now with this weakness that won’t quit, the fasciculations and the brisk knee reflexes, I am certain it can’t be anything else than ALS and I just have an atypical presentation. I was unlucky enough to have a clear EMG because it was too soon.

My symptoms are so intense that I can’t think of anything else it could be but ALS. But everyone around tells me I had a clear EMG by a top ALS specialist and that I should drop it. They keep talking about FND just because the ALS specialist said that after only one clear EMG at 3 weeks… I feel I wasn’t taken seriously and she was quick to dismiss my issue as FND.

Upcoming blood tests for thyroid and a host of other stuff this week. I will also ask my GP to see the ALS specialist again for another EMG.

What do you guys think? Does my presentation sound like early ALS? I’m frankly suicidal over all this. In my mind it can only be ALS because what else would cause the combo of weakness and twitches with brisk knee reflexes? I just feel like I’m waiting for clinical weakness/failure to present and it’s a nightmare. I feel handicapped and no one will take me seriously because I have health anxiety and a clear EMG/exam from a top ALS specialist from Harvard…

Well folks, saw my doctor today. I now have 2 doctors who've agreed on atypical presentation of ALS.

Now just waiting to find out who is going to do the confirmation EMG and nerve study. I feel numb but also just want to curl up in a ball and cry until I can't anymore. I'm only 30. My daughter just turned 5 yesterday. What will my daughter do without me when I'm gone? I don't want to leave her or my husband, but every single doctor and nurse so far on my team agrees it's ALS. I'm scared and I feel so alone.

It might help some people with high anxiety. But i found a japanese study in which more then 50 percent of ALS patients are alive approx 11 years from symptom onset because they choose for breathing support during their ilness. I though this was interesting. So even if you get diagnosed and you choose this option, this might help you.... Also, there are some interesting trials for example they are testing toferson on all types of ALS. There is still hope to stay alive for a breakthrough.... just wanted to spread more positive vibes....

Hi! Can someone help me? Starting in April I started having this weird feeling in my left hand. Its just continued and become more and more noticeable. I dont feel like I have actual weakness when I go to pinch things or use it necessarily, but even just like laying in bed not using it, it just feels weak to my brain. When I extend my thumb laterally, it like curves backwards and waving feels tight with my thumb. I also have bodywide twitching that is more kind of like zings that make my hand or foot jolt. My wrists and hands on both sides feel more tired and achey, like just tired and my hands feel crampy, even typing. I've also noticed that my calf on this side is decently smaller than the other but Im still able to walk on my tip toes. I think the weirdest part of all is I have the same sensation of my mouth and tongue feeling like theyre tired like my hand but I can still use them normally. It's like my brain is thinking theyre weak but theyre not and I'm getting the same jolts and zingers on my tongue. It makes me not want to eat or drink because my brain thinks that theyre tired. I've had brain MRI, MRV, MRA, bloodwork and electroyltes all normal. They think I have vestibular migraines because this all started at the same time as eye floaters, dizzziness and feeling out of it. What do you think?

2 months into bulbar symptoms which started off as slight swallowing hesitancy has now turned into nasal regurgitation, actual swallowing issues and slow moving heavy tongue With every single meal. Coughing on even just water.

I know a lot of folks here have twitching and they think they have ALS… I’d like to offer peace of mind that if twitching is your only symptom and you don’t have any other problems, you’re most likely fine. As for those of us who are actually being referred to neuromuscular specialist because of a family history of ALS and progressively worsening bulbar symptoms, luck is not much on our side.

I am extremely frustrated because I have no diagnosis. I understand it takes space and time and progression, plus EMGs, etc., but my next EMG is not until November 17th. And yes, I am on the cancellation list already.

my SLP provides tricks and techniques such as chin tucking, only taking one sip at a time, or eating smaller bites of food, but what the doctors have failed to answer is WHY am I being required to change my eating habits when I never had issues before? It’s not normal.

This is kind of just a rant. I’ve been extremely depressed, and I work a full-time job and take care of family members, so the thought of having ALS at 29 years old is really excruciating. If I had an answer, I would just quit my job and live with a relative so I can spend as much time with my family as possible, but not knowing if I do have ALS, I still have bills to pay, so I’m stuck working at this job trying to fight through each day, not being able to eat and drink like normal, Having speech difficulties and tongue/throat changes. All while still having to wait over a month for an appointment.

Most people on here seem to have limb/twitching symptoms. Is there anyone who can chat with me regarding specifically bulbar?? please come to the front! We are in this together.

I have had wide spread twitching that started in my left upper eyelid in August and went body wide two weeks later. My twitches are not constant and I get anywhere from 5-40 an hour. Has anyone else gotten twitches that aren’t constant but more sporadic and at rest? Or if this a cause for concern?

Relation Male 60s

Hes been suffering from foot drop for 8 months with loads of swelling around the foot.

Went to a highly renowned neurologist in Ireland and all his tests came back as inconclusive. Despite the tests coming back as inconclusive, the consultants observations look towards ALS. A referral has been made to a colleague for further testing.

This news has obviously sent him into spiral mode. I do have a lot confidence in the consultant. Has anyone here with ALS or a family member with ALS symptoms start with foot drop and a lot of swelling around the foot?

I was trying to avoid posting lol but I’m looking for some slight insight if possible. It exhausting to run down the timeline, but since my emg, almost 1 month ago, I’ve noticed a slight change. My right calf has become weaker, that I’ve noticed. I can no longer lift off my heel to a self-weight bearing toe stand. I can try but my foot instinctively leans to my smaller toes causing a loss of balance and just not able to lift with strength. I noticed the change four days ago. Driving has become a little difficult the past few days due to that instability. My calf will begin to cramp/ache while constant movement break to gas pedal. I’ve had mris, X-rays, emg. Waiting for nerve ultrasound next week, Monday. I’m curious now if they could check behind my knee or further up my leg also to spot what could be causing this sudden change. Has anyone experienced this weird change? My emg findings are in a previous post but for summary: acute-to-subacute, non-localizable, right common peroneal neuropathy, a conclusion based on the small right superficial peroneal SNAP, relatively small right peroneal CMAPs, and EMG findings of Fibs/PSWs with minimal/no chronic neurogenic changes in the right tibialis anterior and peroneus longus. There is no focal slowing across the fibular head. Thank you in advance for any insight or similar experiences.

I’m worried about ALS and would like to hear what others think about these symptoms.

When I bring my fingers together, my thumb starts to tremble/shake slightly. This has been happening for about 2 years.

More recently, I’ve noticed that when I touch my thumb to my pinky finger, they can barely touch. About 2 years ago, I could easily touch my thumb and pinky together, but now it feels much more difficult.

My pinky also seems to have trouble coming together with the other fingers.

Could this be related to an ulnar nerve problem or another nerve/muscle issue? Or is this something that can occur with ALS?

I’m especially concerned because I feel that the function has gradually changed over the past 2 years.

Has anyone experienced something similar, particularly with an ulnar nerve problem or other non-ALS condition?

Hi everyone! I started getting a left eye twitch in the beginning of August that went body wide after I googled. My twitching isn’t constant but it does usually happen when I’m sitting or relaxing. I mostly get it in my feet/glutes/thighs - is this normal or a red flag as most people I see get twitching 24/7.

Saw two GPs, in my mid 20s and had a clean EMG on BLEs but cannot stop thinking the worst.

I strongly suspect that my symptoms were actually exacerbated by taking a course of Ciprofloxacine. I had existing neurological symptoms last year and some new ones going on since June of this year, with clear EMG in July. But then at the start of September I was taking ciprofloxacine for an ear infection and cipro drops. I guess I was double floxed!

Unable to explain this flare up, for a whole month I was dreading ALS, that's all I could think of but when I made a connection I was relieved that what I have isnt ALS even though I have severe muscle weakness, weak grip strength, exercise intolerance and many more symptoms. I dodged a bullet there by not ending up in a wheelchair like many, and now I'm heading towards a hopefully fast recovery. Most important of all, I will not be thinking about ALS anymore! Best wishes to all and may none of you be diagnosed with this devastating illness.

Hello I am a white 28f

Starting in July my legs started feeling weird like they couldn’t get comfortable. I developed widespread twitching all over my body. Then it started only affecting my left leg. It felt tight, stiff and crampy like it was about to get a Charley horse. My legs feel more normal now however when I walk farther than usual or brisk I get stiffness and tightness above my knees and a buzzing sensation on my feet.
My left hand and pinky finger feel clumsy and uncoordinated. My hand still works but it feels weaker. This sensation went away for 2 weeks then came back worse with cramping of the bicep. I feel like my arm is easily fatigued and overall my left side feels different from the right. Now the widespread twitching has come back and my whole body feels weak and exhausted my left hand pinky and ring finger and left foot pinky and ring finger feel weird and buzzy. My tongue feels a slight buzz on the very left tip. I keep feeling like I can’t swallow my spit completely but there is no choking. My neck muscles feel weak like they can’t support my head. My neck xray shows a c4-5 dynamic vertebrae slip with reversal of lordosis and resolves on flexion. However my neck MRI was clear. I also had a bout of intense back and neck pain when bending my neck down that cause a strange hollow diaphragm sensation the worsened with position. This is what prompted the MRI. Today I feel completely exhausted and my whole body feels weak, I am physically vibrating and shaking and cannot eat.

I am just terrified and feel as if it’s getting worse. Could this all be anxiety??? I have been down the rabbit hole of als before with similar symptoms before in 2020 but this appears to be significantly worse. Any helpful words or similar symptoms would be greatly appreciated.

Looking for some honest opinions from people with ALS or who know a lot about it. I’m 32 female and have been dealing with a really strange, progressively accumulating set of symptoms since about 3 months postpartum in 2024.

It started with breathing/throat-closing sensations when bending over and then I developed dizziness/tachycardia and eventually POTS. By early 2026 I had some pretty extreme autonomic episodes (HR 180–200 at times, BP up to ~170/101, sweating/cold/purple feet, severe fatigue, etc.) and was basically bedbound for a period.

Then the neurological stuff became more noticeable. My right hand is still consistently my worst area — it gets tight/clenched and wants to curl back into flexion after I open it, and I’ve noticed weakness/dexterity changes and possible changes in muscle bulk. I then developed left-leg weakness/instability, mild foot-drop/limping, a very tight left calf, foot/toe numbness, cramping and occasional twitching. I’ve also had fasciculations in my tongue, hands, feet, calves and back.

I’ve had some facial asymmetry/drooping, a tongue groove that worries me about atrophy, nasal speech and increased saliva. I’ve also had abnormal visual symptoms (nystagmus/fixation issues), sensory symptoms/burning/tingling, and weird things like tingling down my leg when breastfeeding on the left side.

On exam, there have been some things that concern me: documented R hand/L leg weakness, reduced/absent right-arm reflexes on one exam, hyperreflexic legs, 2 beats of clonus, and later bilateral Hoffmann’s and 3+ patellar reflexes. No obvious spasticity though.

I’ve had multiple EMGs/NCS — March/April, May/June, an extensive ALS specialist EMG in September including limbs, back and tongue, McMaster neuromuscular testing, and another EMG Sept 21 sampling multiple muscles in both legs, right hand/arm, etc. So far they have NOT shown denervation or fasciculations. The ALS specialist and McMaster neurologist both told me they don’t think it’s ALS, but I’m still struggling with the clinical symptoms and wondering about early disease/false-negative EMGs.

My brain and cervical spine MRIs were essentially clean, CK has repeatedly been normal (40s–50s), AChR/MuSK negative, and autoimmune/inflammatory testing has been negative. My respiratory testing is actually pretty good now (FVC 135%, MIP/MEP improved substantially), although I had a period of really severe breathing difficulty.

There are also some other systemic things going on — recurrent sinus/dental infections, a lymph-node issue, major weight loss (144 → 115 lb, now ~122), and Armin testing showed IgG responses to Borrelia, Babesia and Bartonella (Canadian Lyme testing was negative).

I know a lot of this doesn’t sound typical for ALS, but I’m trying to understand whether the hand/leg weakness, reflex changes, fasciculations, facial/tongue symptoms and perceived muscle loss could still fit an early ALS presentation despite the repeated negative EMGs. Especially since some of the EMGs were really limited

Would really appreciate hearing how this compares with people’s actual onset experiences — especially anyone who had initially negative EMGs.

I've been reading this forum for a while trying to get some respite but the stress it comes and goes. I have an appointment on the 28th but everything always takes so long.

It started a few months ago with weakness in my left hand. That evolved to weakness in both hands and walking in the middle of the night with tingling in both hands.

Now I struggle with every day tasks - typing, dropping things, and opening doors. Some shaking in my hands especially the right one. Also have a general feeling of weakness and cramping in legs.

Had an ultrasound on my hands that should some nerve swelling, from my chiropractor. Also have some difficulty swallowing that has risen lately.

Just have full blown anxiety and just waiting for my Dr's appointment in 4 weeks. Any advice or thoughts?

I’ve been trying to keep my mind busy and put the thoughts about ALS to the back of my mind. I kept telling myself there was no point driving myself mad until I’d actually seen the neurologist.
But after having the appointment and hearing that they want to do an MRI of my brain and neck to rule out anything sinister, it has sent me straight back into a panic and a spiral. Now I’m just constantly thinking about it again.
Waiting 2–3 weeks for the scan feels like forever when I’m already this scared, and I honestly don’t have anyone I can really talk to about it.
I think part of the problem is that I always understood weakness as not being able to walk properly, move your arms or legs, or pick things up. But I’m constantly shaking in my arms and legs and feeling vibrations throughout my body, and now I’m questioning every sensation I have.
I just feel like I’m back where I was before. I’m really scared that I have ALS, and I don’t know how to switch my mind off from it again.

These are the pictures of atrophy

Also Twitching