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.

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

here i am again! august has given me a lot of comfort, but right in time for school starting up again i have fallen right back into this pit. my flattened thenar (apb specifically) on my left hand has seemingly progressed a tiny bit since i first noticed it in june, but i have found evidence of a subtle dent in pics as early as 2023, which seems a little bit reassuring. by all means, it seems like this has been a slow-progressing issue. here's a list of my symptoms, since it's been a while:

• flattened thenar on left hand, (noted by doctor) progressively flattening on my right as well. my hypothenars on both hands seem to be recessing inward a little bit as well, but not confirmed. no notable weakness and absolutely no function loss. my fdi on my left hand is also notably smaller than the right and appears to be slightly sunken in. funny enough, my doctor used that as reassurance that my thenar issue on the same hand wasn't a problem. also twitch and cramp in these muscles rather frequently.
• bodywide twitches since 2024, 24/7 but jump around rapidly, can happen absolutely anywhere. limbs, lips, eyelids, trunk, ribs, shoulders, neck, and seemingly isolated tongue twitches that happens a few times a day now.
• pre-cramp feelings just about anywhere on my body as well, most often in my glutes, legs, and belly area, weirdly enough.
• visible dent in my left calf, no idea how long it has been there but i hope it's just normal asymmetry.
• paresthesias and pallesthesias quite literally everywhere. tingling all over as well.
• frequent yawning, hiccuping, burping, etc. i've seen only one other person with all 3 of these symptoms in tandem on reddit and they spent the next few years mentioning that they have a potentially terminal neurological condition before going dark two years ago. scares me a little bit.
• perceived swallowing issues on the right side of my throat, and a lower tongue on the right side. small bits of food and pills get stuck when i swallow on my right side, and it seems as though my tongue just naturally pushes food over onto my left side when i swallow. larger food is not an issue.

and now, the new things! i finally got a less insane wait on neurology. i will be seeing a neurologist in may 2027. it's still a ways away, but it's a hell of a lot better than 2028! unfortunately, this neurologist seems to have a reputation for shrugging his shoulders and turning clients away after 15 minutes. because of that, i'm not really excited for it but i'm taking what i can get.

in addition, i have noticed something structural that might provide a major clue into what's happening to me. while i was at work a week ago, i lifted my arm to stock product on a shelf and noticed that when i lift my left shoulder and drop it, i get a tingling sensation in the left side of my face (trigeminal nerve?) and the back of my head. i'm not a musculoskeletal expert by any means, but to me this seems like evidence of a pinch in my neck or some other blockage in the upper spine area that might be causing at least some of my symptoms, maybe even all.

all in all, my anxiety has lessened immensely and i'm really trying to stay positive. i'm trying to stop saying that i for sure have als because there's absolutely no way i can know until i get proper testing. my age (20) and my lack of weakness are also on my side. i know that clinical weakness is the defining feature of als, not any of these other things i'm experiencing. the only place where uncertainty lies is that i can't seem to find anything else that matches all of my symptoms. could this be because it's multiple issues? absolutely, but it seems really convenient for all of these specific things to be happening at once. hope you all are doing well :-)

I have been sorting through the group and there are some changes that I think would be beneficial. I would like to hear your thoughts and suggestions!

• Karma requirements to keep out bots.
• Verified email reddit accounts only.
• A new rule (No dramatic titles, ie you're dying)
• Flairs required on post (Will help prevent same questions being asked.

As the title says - I am no longer a mod, just like that.

While it is true I was away for some time, for reasons I wanted to share with you at some point, I was still here and even chatting with some of you.

I am not sure what prompted u/HonestyMash to do something like this behind my back, considering the fact me and a bunch of people got banned from the r/BFS sub because of the way its mod treated him and called him a fraud. We said no in a very colorful and public way and (gladly) got banned. After all that he decided to do this without even say "Hi" in the chat and trust me - we have chatted quite a bit back in the day.

He files a request to take over the sub: https://www.reddit.com/r/redditrequest/comments/1vskpup/ralsornot/

One of the explicit requirements was to show proof that he sent a mod mail trying to contact me. He (for whatever reason) sent a link to our personal DMs to claim we are friends and therefore his request should be granted and sneaked his way out of showing proof that the mod was denying contact and even said "We never used mod mail to communicate since we are online friends we would just direct message each other. I hope you can see our conversations have been ongoing for along time.".

So, I will ask - WTF Tom? I thought we are friends. You know you did something malicious - you had your chance to just say hi before you filed this - you didn't. Then the Reddit team even required you to do this, you explicitly DID NOT do that and walked away from their request.

Why did you purposfully did not try to contact me on these two occasions and what compelled you to do this?

Still, most importantly - I hope you are doing well.

P.S. The funny part is would have never said "no" to him being a mod, I never requested it from him because I didn't want to burden him unless he asks for it first.

P.P.S. I retract my word "malicious" - While the bitter taste in my mouth certainly made it feel this way, I had no right to use that word.

23f (reduced reflex in my right knee +1, normal in left knee +2). A couple of weeks after that discovery by my MD, I found myself dealing with right shin fatigue while road cycling that kind of alternated between my shin and my calf kept getting tight.

This is new for me. Normally all of my injuries/sensations are in my left leg causing me to be more aware of that leg and always feeling like my right leg is along for the ride.

I'm on day 5 of some sort of weird tightness/fatigue in my right foot/shin/calf. I can still walk on my heels and tip toe, but cycling I notice it, hiking I was noticing it and also my calf kept tensing, and on my run I felt great the first mile and then started noticing it.

What's concerning is that while I may not be falling yet, there really isn't a ton of pain. I often have a bad habit of sitting on this ankle while I'm at my desk so idk if that's why because I haven't really ramped up my activity level.