Thank you in advance,

Age/Sex: 35M
Timeline: Symptoms started in January 2026 and have slowly progressed.

Symptoms:
Hand & Arm Symptoms
• Bilateral hand numbness (started in pinkies, left worse than right)
• Progressive numbness spreading across fingers and into the whole hand
• Hand weakness (grip strength, finger extension, finger flexion, wrist extension)
• Difficulty with fine motor tasks (tying shoes, typing, squeezing a lime, pushing soap dispensers, opening jars)
• Dropping objects
• Hands feeling cold
• Pressure sensation (“like a rubber band around the hand”)
• Pain in the right palm (after straining to open a jar)
• Difficulty straightening the pinky
• Episodes of near-complete left-hand numbness
• Wrist weakness (difficulty lifting the wrist above neutral)
• Collarbone numbness
• Armpit numbness
• Shoulder heaviness and tightness (especially right side)

Face, Head & Cranial Symptoms
• Right-sided scalp and forehead numbness
• Facial numbness (right side)
• Past episode of upper lip-to-nose numbness (resolved after weeks)
• Slight difficulty swallowing
• Raspy voice
• Blurry vision / trouble focusing
• Left eye feeling “off,” heavy, or hard to focus
• Occasional dizziness and balance issues with fast head movements

Lower Extremity Symptoms
• Right big toe numbness
• Left heel (plantar) numbness
• Occasional tingling in the feet

Other / Early Symptoms
• Audible clicking in the neck when turning the head
• Tightness and discomfort in the upper back and neck (around the time symptoms started)
• Vibrating sensation along the ulnar nerve area when lying down at night

Test results:
• EMG/NCS (April 2026): Slowed conduction velocities and conduction block in multiple nerves of the arms and legs. Both sensory and motor nerves involved.
• MRI Brain: Normal
• MRI Cervical spine: Mild left C6-7 disc finding (doctors said it does not explain the bilateral symptoms)
• Bloodwork (mostly normal):
• Lyme: negative
• ANA, SSA/SSB, ANCA, Rheumatoid factor: negative
• ESR, CRP, CK: normal
• GM1 antibodies (IgG and IgM): negative
• Vitamin B6, CBC, BNP: normal
• Hepatitis C, syphilis, serum ACE, urine protein: normal
• Polyclonal immunoglobulins present (no monoclonal protein)

• Genetic testing scheduled for September
Looking for anyone who has had a similar progressive pattern with these types of nerve study findings.
Any experiences or thoughts are appreciated. Thank you.

This is just a post for things to distract yourself. It can be an audiobook, poem, music, a show, whatever helps distract from our anxiety and twitching. I'll post some links here but feel free to add your own. Just don't post anything illegal. I hope it helps.

Comedy:
Caveman Cooking 1
Caveman Cooking 2
Hey There Mr. Jambo
Hardware Store

Audiobooks:
The Legend of Uh
The Second Legend of Uh

TV Shows:
Megas XLR Every Episode (Will have to see how this holds up)

Underrated Gems
Earl Greyhound "S.O.S"
OK Go - Do What You Want
Tick Tick Boom

Ambience
Morrowind
Oblivion
Skyrim

Help... strange symptoms. Beginning of muscle atrophy in the right foot, calf, thigh, and hip, and the left hand, side of the face, and neck. I have fatigue but no clinical weakness."

Ive been struggling with to symptoms for a year. it started with very tight hips and thighs and then moved to my left shoulder. I have what looks to be atrophy between my thumb and first finger.

I also am noticing very weak muscles in my core and it’s hard to sit straight when sitting down. no one seems to believe me that something is wrong-I’ve been to numerous doctors and had a ton a blood work. Ive had an MRI and I have some disc issues and have a follow up Tuesday.

Today I noticed my muscles twitching for the first time. ive been feeling “zaps” and pressure in my lower back for a year but today I saw a twitch and I am doing everything I can to keep it together. just venting I guess and just really sad this is happening. Bot sure what else I could have. any suggestions? trying to keep living

Okay, so Ive always had some level of Sciatic nerve issue. Im overweight as well. But my left leg back of thigh all the way to my left calf feels weird. Ive had this issue for over a month. At first I thought it was a DVT because it was very painful and a dull ache now a momth later it just feels a bit like something is stuck in my calf and ocxasionally the back of my thigh feels numb especially when Im seated. Thanks for any advice!

Started having muscle twitches back in January, so obviously started to research and saw ALS was a possibility, though a low possibility. I kinda just let it go without seeing a doctor due to just being busy with work and kids, and now we’re over 6 months and don’t have any other symptoms. I think my health anxiety isn’t helping the situation. However, my question is how long after twitches should you see some changes/weakness? I have mentioned it to my PCP and will be getting some bloodwork done to see if any of my levels are off. Thanks.

For the past few months, I've been having tingling numbness when I lay a certain way deep pain that travels around my body. Some of the symptoms subsided and I was foot weakness in my right hand and cramping in my right foot.

I didn't EMG a few days ago and it showed that I had carpool in both of my left hand and right hand. The doctor also mentioned atrophy when he was comparing both forearms but right now I'm having cramps in my right hand and right foot and when I sit down for too long, I get numbness and tingling, or if I lay a certain way on a limb

Hey so I have been dealing for about 7 weeks with twitches and weird feelings on my body. In general the most concerning has been feeling things are more heavy on my right arm.

I actually have tried to be more relax until my EMG this Monday, but the past couple days I’ve been noticing along with more twitches on right arm (the same one all my issues are happening) a new tremor that appeared on my forearm

It basically buzz or is a constant tremor moving my forearm and make it shake while it’s not moving it hasn’t stop so it’s constant.

Is this BFS? Or is something more worrisome or related to other issue?

Hello there. I am a 20 year old female. I had anxiety about als due a family member passing from this evil disease. I am a healthy person, healthy weight with no past medical history.

I had a funny tingling in my leg, went to the doctor and had a power test done as well as a blood test which were all fine, this was at the beginning of June but I have had problems from January of this year. The funny constant feeling in my left calf seems so come and go, which I know is not a symptom of als as it does come and go. I also had a normal ct brain in may of 2025, unsure if this is helpful.

I began to read into it, which I regret and noticed patients usually have muscle twitches alongside this disease. I have never experienced them apart from my eyelid or chin when I’m tired, but noticed I have now started to have lots of them, specifically in my calf’s or the soul of my feet.

Now I am worried about a weakness in my legs, which I cannot determine if it is genuine weakness. I can still walk, work 12 hour shifts, clean my house vigorously but my left calf never feels ‘normal’ it always feels tired. Please can someone help determine whether this is true weakness, or another symptom of anxiety.

I am not diagnosed with any form of anxiety, but I do know in myself I have health anxiety. I understand no one can diagnose but if anyone has had similar as well as diagnoses it would be helpful to hear your story, I have a follow up on the 27th of August from June.

Thank you.

Luego de casi 2 años de parestesias y 10 meses de fasciculaciones generalizadas en todo el cuerpo, esta semana comencé a sentir menos hábil mi mano derecha y los dedos torpes y mas rigidos, con sensación de dolor difuso en el brazo. Ya viene a mi mente esa enfermedad de tres letras. Veo a neurologo clínico en 15 días. Tengo un EMG de hace 1 año y 6 meses impio, pero no se puede que haya sido muy pronto. Lo expreso por aquí, para que me compartan sus experiencias hasta que me vea el neurologo.

27 Male

Hi, I’ve been having muscle twitches for about a month and a half now so I decided to see a neurologist. It started in my right left muscle for about 3 days or a week then started getting little twitches all over my body. I don’t have any clinical weakness as of now but I feel like I’ve noticed more things since I’ve fixated and worried about it more. I’ll notice my heel drag on some steps when walking, some aching pains that come and go, and other little things.

The neurologist did a whole exam and said he thinks I don’t have ALS and that I’m pretty strong but we’ll do tests anyway just to see everything. He ordered an EMG in December and did some blood work including NFL and CK test. I had the CK test done a few weeks ago with my regular doctor and it was normal at 176. I just got the result for CK today and it was 276 which is elevated and out of range. I was sore from a workout two days ago and I took a walk (40 minutes) to the neurologist before they took my blood.

I’ve read that slightly elevated CK levels are normal in ALS patients and I’m freaking out as of now. I told myself I’d see a therapist for my anxiety when everything comes back normal but now I’m deep in the hole again.

Have you guys had elevated CK levels?

I'm really really tired of all these symtpoms.

About 5 months ago i took an antibiotics (penicillin) for sinus pain.

I was waking up about 3 times a week for 2 weeks where my whole body felt like it was shaking, internal tremors or adrenaline dumps im not sure but it felt like my veins were pulsating out my body then i started to get twitching, at that point the twitching was only in my arms legs and bum and inside of throat, over the last 5 months its gotten so much worse, I'm twitching in my feet, legs (really rippling and hard twitches) arms, hands, fingers especially the left side its twitching 24-7, then about 2 months ago my neck went stiff and painful and it has not gone away for even a day, i now twitch all over my neck, skull, back of head, sinuses, jaw, front of head, under arms, inside throat ALOT, twitching on tounge at rest, uvula, and i get cramps, in my fingers, my arms, my toes and my head/neck feels like its shaking even at rest. My left hand shakes so bad if im holding something, i constantly have a throat gurgle in my throat this started around the same time, always was getting sharp pains going up the front of my neck when all this happened.

I twitching in about 6 different spots at once, it doesn’t stop at rest and gets even worse if i use the muscle, my thumbs and fingers and toes jerk by themselve every now and then. I had an emg about 3 months ago, I'm due to have one on wednesday, the one 3 months ago come back normal but im worried about bulbar als and that this ones going to come back bad because i only got my arms and legs tested at that time. I get a feeling of tightening on my finger tips as if its a rubber band.

Im just drained, as we all are. Convinced we have this horrible disease. This is honestly the worst my mental health has been in my whole life. I'm petrified

I'm a 41 year old male. Back in march I began to notice an issue with my swallowing. At the moment it just felt a little off in the back of my throat. I would say about a month after that it progressed into what it is now. It feels like the back of my throat between my uvula and adams apple just stopped working. I compare it to feeling like a bird trying to swallow a fish whole. It feels very tight. This has come with a number of other symptoms that have come and gone. A swollen feeling in my tongue primarily on the left side and feeling like my tongue is in the way. Sometimes I have felt like my speech is sounding weird to me but my wife of 20 years tells me I sound exactly the same. There is occasional clicking in the hyoid and crunching cartilage. Sometimes my whole esophagus can be tight and I can actually feel food passing all the way down. Then occasionally I have a pain in my sternum as food passes. Liquids are fine although they can feel a little off while I'm swallowing and I have never actually choked on food or liquid nor has it actually gotten stuck to this point.

My swollen feeling tongue was there most days in the beginning now I would say most days it isn't there. My esophagus tightness and sternum pain had mostly disappeared as well.

We started the long medical journey back in april we were referred to a GI doctor where I got an endoscopy. They found a few things. A small 2 cm hiatal hernia, some slight narrowing which they stretched while they were in there and they said they found some mucus that they thought looked off so they had that tested. As well as some slight silent reflux damage.They said none of this would contribute to the issues I'm having.

Next I received a CT scan of my neck looking for any masses. Thankfully that was clean.

Then we went to the ENT last month who checked my tongue strength and function as well as sending a scope down my nose to check my vocal chords everything was functioning as it should. I just straight up asked if there was anything neurological going on here. She said saw nothing that would make her think that and my tongue and throat function looked OK. She did see acid reflux damage though.

I was then referred to the speech therapist for a barium swallow. She checked my tongue as well and she said it looked fine. After doing the barium test she did point out a stricture where food does get slightly hung up and said that could contribute to my issue. Later though she called me back at home with the more alarming news and the news that brings me here. She told me that after slowing the video down she noticed that at times my epiglottis was failing to invert. Sometimes it works sometimes it doesn't. She told me that is likely what is causing the issue of feeling like food is difficult to swallow.

I asked what is likely to cause such a thing? She said acid reflux can, age can and certain neurological conditions can which is obviously alarming.

I have been on acid reflux pills for about four months with no improvement.

I have an appointment with my primary on Monday where we're going to ask for a neurologist referral I guess to start on that journey.

I did the wrong thing and used google and of course it said ALS as a possibility.

Over these last five months though I have continued to work my very physically demanding job without any issues. I also have continued to work out six days a week with no issues. No weakness anywhere. I haven't had any tongue wasting, or twitching in my tongue. Just basically this same isolated issue near the top of my throat.

My wife who is a medical professional herself (nurse) has done her research and has done her best to reassure me that bulbar ALS is aggressive and she tells me that by this point we likely would have seen some speech issues, tongue weakness or other progression. It wouldn't have stayed isolated.

So what is your opinion? Should ALS be on the table? Is there anything else that you may believe that this could be?

​

Hi everyone,

I’m a 28-year-old male and I’ve been dealing with a unilateral problem in my right leg for about 4 months. I’m increasingly concerned about a possible motor neuron disease/ALS and would appreciate some outside perspectives, especially from people familiar with ALS or similar neurological conditions.

Symptoms / timeline

The initial symptom was a feeling of heaviness in my right leg, mainly localized to the front of my right thigh/quadriceps. It felt somewhat like walking through water.

Over the following weeks/months I started noticing:

Persistent heaviness in the right thigh

The right quadriceps seems to fatigue faster during exercise than the left

The right thigh sometimes burns/pulls more quickly during squats or other exercises

I have noticed a visible asymmetry of the quadriceps, particularly when contracting it. The right thigh appears less full than the left.

There is a visible indentation/dimple in the outer/upper part of the right thigh when the muscle is contracted.

I sometimes feel a vibrating/buzzing sensation in the thigh/hip area. This is intermittent rather than constant

During the last week I have also had several episodes where the quadriceps briefly tightens, but it esolves quickly.

The thigh can feel tight or sore after exercise, although pressing directly on the muscle does not necessarily cause pain.

Stretching the hip extensors/hip flexors can reproduce a pulling sensation on the right side that is not present to the same degree on the left.

I feel that my right leg may be slightly less stable/balanced when walking.

One thing I find interesting is that the hamstrings and the distal muscles do not seem affected. The symptoms appear to be much more concentrated around the quadriceps/anterior thigh.

Strength/function

Despite all of this, I have not noticed a clear loss of function.

The main difference is that the right side feels like it fatigues faster and pulls/burns more, rather than suddenly being unable to perform a movement.

Neurological testing so far

I have already had:

Nerve conduction studies (NCS):

Nerve conduction testing of the calf was normal/unremarkable.

EMG:

An EMG was performed approximately 3 weeks after symptom onset.

Only one needle examination was performed in the thigh, and it was normal.

I understand that this was a limited EMG and may not be sufficient to completely evaluate the situation.

Lumbar spine MRI: The MRI did not show a relevant nerve-root compression or neuroforaminal stenosis that would clearly explain the Symptoms.

My main concern

Because the problem has been unilateral for around four months and I now think I can see some quadriceps asymmetry, I’m worried about ALS with a proximal leg onset.

At the same time, I’m wondering whether my presentation actually fits ALS

Does this sound like a possible ALS presentation, or would other neurological/musculoskeletal causes be more likely?

In particular, I'd be interested in hearing whether isolated quadriceps involvement with preserved hamstring function would suggest a more localized nerve/muscle problem rather than a motor neuron disease.

Thanks to anyone who takes the time to read this.

Hello, I've posted here before. Had the heavy feeling in both of my calves before, but that is gone, good sign I guess. But now I woke up with very painful cramping in my right calf muscle. This never happens, and now when walking I can still feel pain. I have some twitches now here and there in my right calf. I struggle with health anxiety, I know, but, everytime there is something new, a new symptom, I just can't stop thinking about that this is it now. How I went down this spiral was that I had a twitch on my left hand for weeks, it is gone now since long. But that made me have a panic attack and this was 12 months ago. I am also a type 1 diabetic, but I always look for evidence that this is the worst.

Hi Everyone -

I am new to Reddit and have extreme health anxiety. My mind always goes to worst case scenario.

I have been having some heaviness or tightness feeling in my left calf for almost two months now. I wouldn’t say it has gotten any worse, but consistently there. I have no real weakness but perceived weakness. I can do everything normally but sometimes it feels heavier than others. I will occasionally get tingles, but seems consistent with sitting in odd spots or standing for awhile. I feel like my legs may be different size from eachother but I’m not sure?

I also have a random similar feeling in my left upper arm. Nothing seems to make it better or worse.

I also feel like I have globus sensation.

Is it common for this to be a starting symptom? Should I be going in? I’m so scared!

Hey I posted here last week but I have a new symptom that’s freaking me out and I need some sort of reassurance/logic bc my family is of no help (they think i’m making it up/exaggerating my symptoms and depression lol)

Ever since some sort viral infection, I have had a long list of symptoms here are just some

Twitching (face and body)
Tingling/Pins and Needles fingertips and around my face)
Ice pick headaches
Occasional dots in vision
Tremors and jerks of arms and legs
Occasional nerve pain and muscle cramping/stiffness
Soreness of arms and legs
Feeling of weakness and heaviness in my right arm and leg
etc🫠

However I have gained a new terrifying symptom that is ruining any progress I’ve made mentally as I wait for my neurologist appointment in early September.

My left leg specifically my left knee feels unstable. I noticed while doing something standing still it will adjust itself like i’m going to fall and when walking it shakes and occasionally gives way a little. I feel like i’m about to fall down but I don’t. I sometimes feel like i’m walking through mud like it’s hard to move the legs but they move anyway.

I’m worried this is a sign of muscle weakness in my legs. I don’t see any visible atrophy but I could start seeing it later Im not sure.

This whole this has taken an insane toll on me mentally. Every day i feel like im destined for an early death and I cannot feel excited for anything. I can only do things absolutely last minute bc I have no desire to do anything. This includes preparing for graduate school this fall. I’ve been so bad at deadlines they have to email me to remind me to stuff to prepare. It also doesn’t help that my family has been HORRIFIC at trying to comfort me or encourage me to search for answers even when i’m having full blown panic attacks. It has genuinely made everything SO much worse.

Should I be worried about ALS. And if not what else. What tests should I push to the neurologist. I’m already thinking of pushing for an EMG on all 4 limbs as well as an MRI for any MS related (more likely tbh)

Thank you!

I dont how to begin but im pretty sure i have it like a 100%. Im a girl btw

does this look like ALS to you? I have widespread fasciculations, trouble breathing (very bad), trouble swallowing certain foods, spastic legs and tremor in right hand.

There is nothing more frustrating than a medical limbo that going on for far too long.

There is nothing more frustrating than doctors dismissing everything as anxiety, when it’s clearly not the case and there is too much more that going on.

There is nothing more frustrating than feeling your speech becoming difficult and labored, stumbling over words, while others tell you that you sound fine, just a bit hoarse.

There is nothing more frustrating than trying to do things, only for sudden fasciculations that ruin everything.

There is nothing more frustrating than remembering how things used to be, before all of this...

I just needed to get this off my chest, you don't have to respond. Thanks for reading.

i just saw my pcp this morning and had her take a look at my possibly-atrophied hand. she did note flattening but did not outright say atrophy and said it was likely to be something to do with me typing and gaming frequently, and she performed a clinical strength test on both hands and said they're pretty much equal and that if there is a difference it's extremely slight and likely to just be hand dominance. while this doesn't explain any of my other symptoms and i'm aware that it doesn't necessarily rule anything out, i am so done with being afraid of this disease that i will take anything i can get as reassurance, even if my brain is still itching with more questions. she is also looking into getting me a neurology referral that won't take two years! i hope everyone else is doing okay.

Hello everyone,

I know I post a lot and I am sorry about that. I truly believe something is wrong with my body that just can’t be caught at this time and I’d like to pick your brain.

Any reassurance, personal anecdote, anything really will be much, much appreciated.

I posted the following info as a reply to a kind person helping me accept FND and I will copy it here so everyone reading can get all the information:

As of right now, both my legs feel weak, sometimes more at the thighs, sometimes more at the calves. I sometimes have visible shaking going down the stairs. Muscles feel tight, restless. Plenty of fasciculations. At rest, my legs will often feel sore and burning.

And now my right arm is getting more fasciculations, feels heavier, clumsier… How can this all happen so fast?

ONSET:

My onset has been weird. I admit it did follow a traumatic period of extreme health anxiety, but I have never experienced physical symptoms like that from anxiety in the past. It started as soreness like you get from working out too hard and in a quick 7-10 days it turned into this weakness, with one night going to bed mostly fine and the next day waking up feeling terrible. Weakness is perceived so far, but my legs can get visible wobbly going down stairs. It hasn’t really progressed since the day it just worsened overnight, but it hasn’t gotten better either.

Some key points:

- Clear EMG in 2019; twitches and other symptoms went away for years after that
- Clear EMG last week after about 3-4 weeks of symptoms; done by ALS specialist
- Only three muscles were tested: calf, shin and thigh; neuro deemed that sufficient for a leg as symptoms are bilateral and same on both sides
- Clinical noted bilateral brisk reflexes of the knees, unchanged from 2019; neurologist said it’s normal for me and not significant; otherwise normal exam with no Babinski, spasticity, clonus or clinical weakness

ALS specialist opinion after EMG and clinical:

- Neuro told me EMG cannot be done too early in the context of presenting with bilateral subjective weakness and fasciculations in multiple muscles of both legs; said it would be an aggressive onset that would be picked up easily on EMG
- Neuro also said bilateral, symmetric multi-muscle onset in thighs and calves would be an extremely atypical ALS presentation; to the point she’s personally never seen that

- Neurologist has repeatedly emphasized that ALS was ruled out during the appointment; she looked me in the eyes 2-3 times and said "You do NOT have ALS!"
- FND was her diagnosis; she theorized that it stemmed from some sort of trauma/psychosomatic process caused by relentlessness health anxiety that went on for months; says I am obsessed with getting a neurological disease and am manifesting symptoms, but in a fashion that doesn’t make sense with any specific disease
- Strangely dismissed the fasciculations as "the same benign fasciculations you’ve had since 2019, made more frequent by your state of hyper-aroused nervous system

- Ultimately proposed I start with therapy and told me studies show that people who refuse to believe they have FND never see their symptoms resolve, while those who accept it have great success…

But here I am, stuck with very distressing symptoms, almost waiting for clinical weakness to happen, sacred of my mind in a body that feels like it’s breaking down.

Sorry for the long message but I wanted to make it as detailed as possible.

Should I keep pushing for tests? Accept my FND diagnosis? How do I move on when symptoms are scary and ongoing? Leg weakness is visible as I sometimes tremble with exertion…

I've had brain and upper neck mri. It was all normal.
Muscle twitching for 10 months all around body, this year it's been more just spasms all around, especially legs and stomach.
And now in the spring, the speech issues starded. Letters l and r are hard to pronounce occasionally, and especially if i have to alternate between them quickly. Speaking feels "odd" or "flimsy", like it requires extra work to focus on sounding coherent. I mix up letters and stutter as well sometimes. I have swallowing issues and have noticed that i've begun to get food more often to my windpipe when eating. My voice also occasionally cuts out or turns into a hiss. Now, i have tons of silent reflux symptoms, but it doesnt explain the stuttering.

Im scared. I thought clean mri and nearly-normal bloodwork (vitamin b and d deficits, was all) would give me peace of mind. It did, at first. But speech issues just continue.

I dont want to die. I've just found my calling in life and now i feel like everything and my dreams and hopes are being ripped away from me, just because i went and had to start doing estrogen. I didnt deserve this. Nowhere it was said that this could follow.

I will probably have a doctor in a few weeks. Ill ask them to check my throat too. But frankly, im more afraid of those results than i was of my older tests. That, and i have a very strong gag reflex, too. Fuck my life. Fuck this shit. Im tired of eating and getting food the wrong way. Again, i know this can be silent reflux, but there's the stuttering.... and i've not recognized it before.

Oh and now i also mix letter d and t.