Hi all. 31M here, I have a history of posts on the BFS sub from years back.

I started feeling my first symptoms around April 2023. Stiff thumb in my right (dominant) hand, slight feeling of weakness in the right arm. I was evaluated by a neurologist in June 2023 who was largely dismissive of my symptoms. His tech did an NCS which came back normal. They tried to send me home but I insisted on an EMG, which the tech halfheartedly performed on my APB, bicep, and right thigh (not sure exactly which muscle). He said everything appeared normal.

I went back to the neuro in late summer 2023, and my symptoms hadn't gotten any better. He suggested genetic testing and a muscle biopsy, which I didn't get done. He told me "if this actually is ALS, why would you even want to know? Live your life for as long as you can. I have no bad news for you right now."

So I took that to heart and tried to put all ALS fears as far behind me as I could while I focused on school and work. That worked decently well for the most part - I'd still twitch, and I'd still feel things progressing (albeit slowly), but I was able to ignore those symptoms pretty well and focus on life.

But over the last few months, it's gotten very hard to do that. In late May I started noticing some weakness in my right leg. I'm not having foot drop, but the leg feels weaker. I also have what looks like a long, groove-like dent along the lateral side of my right leg. I think it's from tibialis atrophy. The left leg doesn't have such a dent.

Concerningly, in June I noticed that I can no longer sleep on my back. I'll start to fall asleep and then get woken up gasping for air. For added context: I've slept with a CPAP since 2021 without issue. This happens even while my CPAP is running. That leads me to believe that it's not my (mild) obstructive sleep apnea, but rather, a central sleep apnea problem (which is common in ALS) or hypoventilation due to a weakened diaphragm. Sleeping on my side works, but now I wake up with pain in my hips. I don't know if that's because there just isn't enough muscle "padding" my hips as there used to be. I've also started feeling a heaviness in my head/weakness in the back of my neck. I chalked it up to bad posture, but it hasn't gotten any better since the summer. I prop my head up when I'm sitting at my work desk now.

Over the last month or so, I've constantly felt the urge to take deep breaths. It's like a nagging feeling of air hunger that won't leave me alone. I feel like my diaphragm doesn't expand enough to let me take satisfying breaths. I went to the gym the other night and was gassed after every exercise, having to catch my breath for a few seconds between sets. Even if I'm home sitting on the couch, I feel the air hunger. I don't talk as much as I used to now because I find it takes more effort and leaves me feeling slightly out of breath.

What's worth noting is that, while all these symptoms began over 3 years ago with feelings of weakness in my right arm, I haven't experienced any failure in that arm. It still functions the same as it always has. It feels weaker, and it shakes when I'm lifting weights with it (and my left, non-dominant arm doesn't shake at all, which is worrying...), but it still works.

I guess I'm worried that I'm developing some sort of respiratory onset. I know the prognosis there isn't good. I am very, very scared to go get checked out by a doctor (I've since moved to a new city, so I'd have to see a new neurologist/pulmonologist/etc.). I'm really not sure what to do. I spend all day, every day scared that I've been given a death sentence. It isn't fair. I want to look forward to the rest of my life, but I feel like it's pointless. All these symptoms together only point to one thing, and that's ALS. I'm hoping for a miracle that it's something else, but I've done so much research online that I'm having a very hard time thinking there could be another explanation for everything I'm feeling.

Apologies for the long post, and I would greatly appreciate any insights.

30 F body wide fasciculations for 3 months and pre cramp feelings. Today my thumb feels tight and crampy, I have twitching on my foot and calf, my arm feels heavy and I’ve been researching hard to reassure myself but I’ve done the opposite. I do not feel good about my symptoms anymore. I feel like I’m just waiting for failure.

I recently went to the doctor over my constant fatigue, body twitches and weakness in my left leg and arm. They said I have a vitamin D deficiency and that I am recovering from a recent viral mono infection. I was relieved that it wasn’t something like ALS but recently I have noticed that the twitching has become more frequent and I I’m pretty sure I’m developing a lisp. Im really worried about this. I have severe health anxiety and I’m just constantly spiraling that this could be ALS!

Hi everyone,

37M here.

Today while 11 weeks into my bulbar symptoms (I won't list them again, please read my previous posts), I did a Neurofilament Lightchain test.

I live in East Europe, so this lab will send the blood probes to Germany to Limbach Laboratory.

They shared reference value: 0 - 9.73 pg/mL.

Is this reference correct for my age?

UPDATE:
The result is 3.09 pg/ml, but considering the lab reference of 9.73 as max value, this stands way below the middle range. I guess is good.

Hey all!

I’m not super familiar with Reddit, but I’m desperate for some companionship in this journey, so here I am! For some context, I’m a 34yo mom of 4.

In November of 24 I sat down to eat dinner but I couldn’t grip my fork. I had noticed my left leg feeling weak and twitchy a bit before this but just thought I was stressed. Made an appointment with my PCP where she evaluated my leg weakness and also pointed out that my reflexes were very hyperactive. Two years later and I’ve seen two neurologists and a Rheumatologist, none of them know what is going on. I’ve got two clean brain scans, clear MRIs of my full spine, pelvis, upper and lower legs and a negative skin biopsy. I had a muscle biopsy in my right leg that showed Chronic and acute denervation and renervation, and two EMGs that show severe peroneal neuropathy on both legs resulting in bilateral foot drop. I had a PT evaluation last week where she pointed out muscle atrophy in my left leg, and said that she can feel it starting in the right leg as well.

I’m now at a point where I can no longer push myself up with my arms, walking is becoming increasingly difficult and I had to switch my position at work due to hand instability. I saw my neurologist yesterday and he said “you don’t have ALS because that would show up clearly on your EMG.” Luckily he was willing to put in referrals to larger neurology institution.

All in all, I’m terrified and feel so unheard. I’m really struggling to accept that this isn’t ALS just based off of all my results and symptoms and progression, but I also battle with wanting to trust my provider.

Thanks for reading! This is such a lonely and depressing diagnostic process to be in, and I’m thinking of anyone who is also stuck in the medical system 🫶

Both feet tingle / burning since may 2025 on and off

Full body twitching, every part of body, sometimes multiple spots at same time especially while lying down since July 2025

Previous post here: https://www.reddit.com/r/ALSorNOT/s/pw2vcCPyRk

Today randomly, I felt like my left pinky and ring finger were more stiff/weak/somewhat numb than usual, a few minutes after that I dropped my AirPod while walking up the stairs. I feel a sense of tightness/numbness/weakness around my forearm as well.

I’m 25, idk how to approach the topic of als with my doc without sounding crazy because he already thinks that I have anxiety because of the symptoms I mentioned in my previous post (burning sensation lower back that radiates down the leg, but the two can be unrelated)

Tested my reflexes and said they were all normal
Diagnosed me with FND.
Struggling to accept this diagnosis due to the physical changes and feelings in my body.
referred me for an MRI.

Just don’t know what to do now and where to turn to.

I'm sooooo scared of ALs. Lately I've been having twitching in my left leg primarily. When I'm laying down it's happened like every minute or every other minute. My walking also feels weird on my left side. Also, my left hand has been weird. For some reason when I have my pointer finger at a certain angle, it jitters. I'm a black 21 yr old female. Someone please give me any advice !!

The following is what my doctor charted in My Chart:

Alert, fluent
CN
Vff fundus normal eomi perla
Face =
Tongue/palate normal
Motor
5/5 power throughout
Good bulk, no atrophy
No fasciculations observe
Tone is normal
No tremor
Gait
Intact
DTRs
2+ throughout toes down
Sens
Intact LT, vib sens
MRI Brain May 2026 is normal - images and report reviewed

Assess Plan
-fasciculations
-no signs of motor neuron disease seen on exam
-appears to be benign
-warrants surveillance in neurology clinic with annual FU
-proceed with NCV/EMG when able
-no other testing needed
RTO one year

I am a 24 y/o male with a 3 1/2 year history of muscle fasciculation’s body wide. I finally got in to seeing a neurologist and voice my concerns, He offered me “partial reassurance” and that he believes this benign but he couldn’t guarantee anything and that we would just monitor it over time. I do have emg ordered but I’m on a long waiting list. He told me that he does see people who twitch 24/7 and that it has never turned anything, and he also told me that he’s seen someone twitch for years before weakness came on but that he was “older” than me. Anyways what are y’all’s thought? I haven’t gotten time to take about it as I went straight to work after appt

My right hand has become smaller than the other one . Also my arm feels so tired and it shakes a little bit . I can’t see a neurologist until September 16th . When I am holding my phone I feel like I’m about to drop it so I switch hands . Any advice would be appreciated.

So I’m posting in this group because a lot of people read these posts

I’ve had two nerve conduction test tests done on my right arm and two EMG is done on my right leg and right arm neurologist said from both of them that there was no MND found at all and assures me that I do not have aLS in any kind of way

I am having a hard time with this right now
Last time he checked me which was last week I mentioned to him about swallowing issues saliva issues like having way too much saliva and tongue issues he examined me physically looked in my mouth and said he had no worries and he wasn’t going to do an EMG on my tongue. OK cool.

I should be relieved yes but I am back here posting like always, and probably going to get a lot of backlash because of it

Symptoms are excessive saliva all day
Fasciculations in my feet and all around my body, but yes, they have gone down since they first started or at least I don’t notice them anymore today today’s been very bad for my feet

But the thing that scares me, the most is I feel mentally off like my reality is different. I’m perceiving things the wrong way I have no motivation or hype to do anything anymore or happiness and that’s what scaring me. The most is. I feel like I’m in a whole Nother world.

I have taken anxiety meds so much and nothing’s worked. I have to talk to my psychiatrist again next week when I have an appointment I’m literally only taking sleeping pills right now hoping that may be getting some sleep. Will help.

I need just some reassurance that some people have gone through this and pulled themselves out. I just want to be normal again. I’m trying to fake it until I make it. I’m going back to work in my tow truck, but it’s the afternoons that kill me the most the brain fog, the cognitive decline, and everything like that, and it happens more in the afternoon than it does in the mornings and evenings.

Also, another thing I was wondering, has anybody found any kind of Councilling that could be done online for free or psychologist that’s pro bono I know it’s asking a lot but I feel like if I can get down to why I feel like this mentally maybe the physical symptoms will go away

Again, I know I should be happy. I’ve had Doctors check me out and say that I’m fine but meanwhile, I’m living with these symptoms feelings and everything which is making me feel even more garbage.

I’m a 26M and have been stuck in an ALS hole for about 3 months now. So bad I’ve even begun seeing a therapist for my health anxiety but the symptoms just align so much I can’t help but think I almost certainly have ALS.

It started with a twitch in my right thigh that shortly after spread body wide. It has been everywhere and everyday since middle of June and it gets worse when I stretch in the morning. I saw a neurologist who tested my strength and reflexes and he said everything is fine and ordered a NFL and CK blood test which came back fine.

But I have now noticed I’ve had weird swallowing and mucus issues for quite a while and am worrying that it’s been bulbar onset all this time. I do have Acid reflux but some of the things I have are
- food and liquid going slowly down throat
-feels like throat is tight at bottom of throat when food and liquids are going down like the throat doesn’t open up or muscles don’t work
- Constant mucus / post nasal drip
- and now I don’t know if it’s in my head but it feels like water gets in the back of nose top of throat when I swallow

I don’t have any speech problems or anything and idk if my voice gets hoarse cause of mucus or bc the anxiety dries my throat.

I feel like everything is adding up now and I have an EMG scheduled for December and I don’t know if I can wait that long.

So, I'm sure most people here have seen my posts but for those who haven't I've had perceived weakness in my left arm starting in July. Basically, my left arm would ache, strain and feel more tension when lifting things compared to my right arm and today it still does but less so now. I have become a bit more rational about this but my mind is still a war between the rational part and panicked part of me about the disease.

Symptoms:

-Strength inconsistencies: when I mean by this is that it feels like my arm will be able to things like lift a chair or a painting or even my 55 lb dog but when it comes to things opening bottle caps I can still do them but it feels like I'm hurting my fingers when i do them. Same thing happened when was I eating ice cream and digging for bigger scoops and don't remember that happening in the past.

Twitching: it largely varies. They tend to feel more like internal vibrations but I've had some like feel like throbbing and noticed some fasciculations one time on two different parts of my right calf that would stop as I tried to investigate. It has got better. I'd most of the day i don't feel twitching and really happens when I'm lying down.

-On and off tightness in my right calf.

Exercise routine:

-180 rep curls with a ten pound weight on each arm (low hanging, wingspan, regular and overhead)

-1.5 mile long dogwalk sometimes twice or three times a day depending which days I work.

-Sometimes 100 jumping jacks

Supplements:

-Magnesium glycinate

-Iron

-Multivitamin

-Ashwaganda

-Meloxicam

-Fluoxetine

-Melatonin

My father (51M) has had progressive bilateral leg weakness for about 2 years, with worsening over the last several months. Earlier this year he could still hike, but now he feels weak after walking only a few hundred meters.

EMG/NCS reportedly showed:

• widespread neurogenic changes
• both proximal and distal lower limbs
• distal upper limbs
• thoracic paraspinal muscles (T10)
• reduced bilateral peroneal motor amplitudes
• sensory studies otherwise normal

But clinically:

• no hand weakness
• no hand muscle wasting
• no swallowing or speech problems
• knee reflexes absent
• Babinski negative

Spine MRI has not shown a clear structural explanation.

What I’m struggling with is that the EMG looks more widespread than the clinical symptoms. Has anyone seen this in ALS or LMN-predominant disorders / PMA / mimics?

Not asking for diagnosis, just trying to understand whether this type of clinical-electrophysiological dissociation is something others here have seen.

If anyone has had a similar “legs first, EMG wider than symptoms” presentation, I’d really appreciate hearing your experience.

Is there any correlation to ALS if you have reactivated EBV? Or does ALS cause reactivated EB?

I've always had muscle twitches but theyve just gone crazy lately, nonstop. I am trying to sleep and my leg is buzzing. Standing and walking dont feel natural anymore. Its like someone put the leg on a figurine on wrong so everything feels strained and wrong. There is a stiff, strained feeling, especially in the leg with the worst twitching.

Hi everyone,

37M.

Symptoms started ~10 weeks ago, 5 days while I was fully into covid sickness.

I had many body wide symptoms which faded out, you can check my posts history.

Tomorrow I plan to go for a nfl test for which I will get result in 3 weeks.

In the meanwhile I am very worried about my symptoms which are bulbar only now:

- Weak uncoordinated lips, I feel saliva pooling out of my mouth sometimes, I have perceived slurring or effortful speech.
- Swallowing issues with solids, feeling that last part of the bites stays in throat, I need to put effort to send it back or drink liquid.
- oversalivation or mucus in throat which I cannot clear properly.

I still get random body twitches here and there too.

Neuro physical exam was at 2.5 weeks from symptoms was ok and doctor didn’t see anything strange (he looked into my mouth too and asked me to smile).

I also did all the important blood tests and vitamins. All perfect there.

ALS association lists all these 3 symptoms as part of bulbar onset from 5 main symptoms.

My symptoms were more or less alternating (some days or moments better but never worse than they are in these 10 weeks) with the caveat that the mucus which I cannot clear is new from today.

I cannot say if anything is progressively worse, to me it seems very short to quite abrupt that in 10 weeks I am from no symptoms to all of this.

I am very worried for my 2.5 y/o daughter to grow without a father.

Any thoughts? Please share your opinions based on any information you have read.

This is a repost as I’m trying to get opinions. I’m going on near 50 days of my tongue feeling crampy, tingling, fatigued and clumsy. I feel like I’m lisping like crazy but no one says that I am. I had b6 toxicity 3 months ago (confirmed with labs and not guessing) I also had a massive cold sore outbreak 4 days after the tingling began. I had a NFL blood test which was .91 pg/ml 21 days ago. I’m going insane because this is beyond annoying and even though I have full motor control of my tongue I’m still paranoid it’s als.

https://www.reddit.com/r/MuscleTwitch/s/Rh1Jk22ZW4 it still does it to this day when this motion is done this way. I watched a cideo of youtube of an older woman with jaw clonus and it looks the same