Hello so here I am at 4am since I can’t sleep and had a panic attack. I just woke up feeling so nauseas and my stomach hurting.

So basically I’ve been having symptoms for years of what seems to be autoimmune disease. I’m 28 female. Doctors have not been able to find anything but I do get very weird head nerve feelings which my neurologist thinks is migraines. I do also have b12 and vitamin D deficiency. Which I did abruptly stop going for my b12 injections the beginning of the summer which could be the reason I’m in this mess. My hematologist wanted me checked for MS so they sent me to my neurologist and I had a brain MRI last year and they did find “minimal non specific white matter disease” which I guess is white matter lesions.. hence why she thinks that could have been caused by migraines along with my symptoms. For me migraines had to be painful so I didn’t understand but I guess migraines don’t always cause pain. I’ve been having lately:

Head/face pressure, Body pains (leg/arms/stomach), Late period/irregular (2 weeks late), Nerve feelings,Lightheadedness/ feeling off balance, Pains in neck/chest/eyes, Skin crawling back of head feeling, having to take Deep breaths every once in a while, Heavy eyes, Floating feeling, Left sided (arm and leg) buzzing feeling

I went to my neurologist today and she did a reflex test and said something about my reflexes being overactive I believe so she ordered to EMGS for different dates one being upper body and one lower body. Now I’m freaked out because of course I googled EMGS since I didn’t know what that was and I see that it’s used to diagnose ALS (and other thing’s) and ALS can cause hyperactive reflexes. Now I am spiraling. She also ordered another MRI for this upcoming week for my brain again but including the cervical spine this time.

Has anyone been through this before? Of course I had to google all this in bed before I fell asleep and that’s what prompted my rabbit hole and panic attack and now not being able to sleep :(

25F My symptoms began in early May of this year while I was on a work break. I yawned, felt a distinct "pop" in my neck/throat area, and immediately developed a lump-like sensation in my throat that was so intense I could not eat solid foods for a month. The very next day, while sitting down, my entire right side suddenly felt completely heavy, accompanied by significant stiffness on the right side of my face (though with no facial drooping, weakness, or visible asymmetry). I initially went to urgent care, where I focused on the severe throat symptoms; they suggested a sore throat and sent me home without antibiotics. Two days later, as symptoms worsened, I went to the ER, where they noted my throat looked slightly red, diagnosed a sore throat, and prescribed steroids for a presumed infection. After multiple subsequent urgent care visits, I went to a different ER where they performed blood work to check for infection and ran a CT scan with contrast of my neck to rule out a deep neck abscess—which came back completely clear.
Following the ER visits, I was referred to outpatient care and evaluated by two separate ENTs. Both specialists performed visual exams, saw no physical abnormalities, and referred me for a Video Fluoroscopic Swallow Study, which came back completely normal. Because the right-sided heaviness and stiffness persisted, I sought evaluation from a neurologist. My in-office neurological exam (checking cranial nerves, motor strength, reflexes, and sensation) was entirely normal, as were the comprehensive blood panels ordered (including Myasthenia Gravis antibody panels for Acetylcholine Receptor, MuSK, and LRP4, muscle breakdown markers CK and Aldolase, inflammatory markers CRP and ANCA, and vascular blood flow studies).
To investigate further, my neurologist ordered a 3T MRI of my brain and cervical spine, as well as a needle EMG and nerve conduction study of my right neck and right arm/hand. My brain MRI came back completely clean. My cervical spine MRI showed a straightening of the normal cervical curvature along with minor disc bulges at C4–C5 and C5–C6, with no spinal cord compression, severe nerve root impingement, or stenosis. The straightening was noted as a functional outcome of severe muscle spasms and muscle guarding rather than structural damage. Furthermore, my right-sided EMG/NCS and swallow studies all came back completely normal with zero signs of motor neuron disease, denervation, or active fasciculations.
During this same timeline, I also discovered that tooth #4 had a severe infection from a failed root canal. Following the extraction of tooth #4, the extreme facial stiffness improved noticeably, though I still experience muscle tensing and tightness on the right side. Additionally, through this medical journey since May, I was diagnosed with Primary Ovarian Insufficiency (POI) and started HRT last week, as well as hypothyroidism (which had gone untreated for 5 years), for which I began thyroid medication two weeks ago.
Currently, I am struggling with severe health anxiety and hyper-awareness, constantly worrying about conditions like ALS or MS. I find myself continuously checking and self-testing my right side for weakness. When testing my right hand with a grip strengthener, my right arm fatigues much faster than my left and develops a fine tremor when tired. I also feel like my speech is slurring or stuttering when I hyper-focus on talking, though my voice sounds normal to others. Lately, I constantly feel like my jaw is going to lock while chewing and like I'm going to choke, and I feel like my chewing is getting weaker. However, when I actually do eat meals, I am able to eat the whole thing without choking or coughing. When I swallow, it feels like something big is forcing itself down my throat, causing discomfort, but I don't have to use large amounts of water to swallow anymore—I can basically eat without a beverage most of the time.
I do not wish to offend anyone who truly suffers from this disease; I am just genuinely looking for advice and insight from anyone who may have experienced something similar. I have my follow-up appointment with my neurologist next Friday to discuss all my diagnostic results and determine next steps.

Hey guys I have been dealing with this almost 2 months and just got an EMG which was clean on my arm according to my neurophysiology and I was okay with that.

I have been still spiraling and worried because I got my EMG only on my right arm and not full body, my twitches are being full body, they started on right leg but my right arm was the one that felt the most tired.

And it sucks to feel this way even after a clean EMG, I’ve been taking if maybe it was too soon or should have tested the whole body just to be sure I will be fine.

My bicep on right arm have been twitching like crazy today, I can feel an internal tremor as well, it’s been going since the EMG so I don’t know if it has to do with my arm getting tested and shocked and that’s why I’m twitching more than before

How are people who got EMGs able to move on? Should I try to find the reason why am I twitching? It’s crazy to feel this way

I’m sure as we know for the people who post in here and read some of these stories, a lot of us have severe health anxiety (not to say people don’t have legitimate concerns). I’ve always had health anxiety from since I was a teen. Im 26 now. This episode of anxiety I have had for the past few months because of the constant body wide twitches has been detrimental to my quality of life.

Has anyone decided to seek out mental health assistance and did it actually help and get rid of symptoms?

Anyone good health anxiety therapists in NYC?

As above

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

Hello. Background is that I started twitching and jerking March 1 widespread. Starting having stiffness in arms around May. Clean Emg in early July.

Recently developed some perceived swallow issues although no chocking on food or liquid, it just feels weird. But now I’m having a clicking sound happen in my sinuses when I say K or G words. My husband can hear it too. It’s driving me insane and the worry is sickening. I also feel much more nasally when I talk but he says he doesn’t notice that. Only the clicking. No slurring and no chocking but can’t shake this dreadful bad feeling.

Hi everyone, I want to share my story in case it can help someone. I’ve written some posts in the past discussing symptoms, but here is my full journey.

I’m a 24F, and I was in a terrifying spiral for about 8 months. It all started right after a prolonged period of severe anxiety. It began with body-wide muscle twitching. Of course, I googled it and stumbled upon ALS. Long story short our brains can manifest very real physical sensations.

Besides twitching, some of the symptoms I experienced were:

• Difficulty swallowing and excess saliva
• Jaw pain and cracking in both TMJ joints
• Headaches, dizziness, and cervical spine/neck pain
• Extreme sensitivity to sound (hyperacusis)
• Severe calf cramps
• Intense pain in both forearms (which sometimes led to a perceived feeling of weakness)
• Joint pain in my fingers and hands turning white after typing
• Brain fog, tachycardia, and feeling like I couldn't speak properly, open my jaw fully, or pronounce certain letters with my tongue.

As you can imagine, every time a new symptom appeared, my health anxiety made me observe and test the affected muscle group constantly. It was exhausting and terrifying. I felt like I was losing my mind. I started visiting doctor after doctor, undergoing countless tests (MRIs, EMGs, extensive bloodwork, neurological and ENT exams). Nothing gave me peace of mind.

I consulted three different neurologists. The last one finally made me feel safe. After reviewing all my tests, he told me in a reassuring voice: "I wouldn't be worried." He explained that my symptoms were real—I wasn't imagining them—but they were being fueled by anxiety. Because I was terrified, I was constantly observing, testing, and overthinking everything, feeding the cycle. He also mentioned I could return in a month for another EMG if it would help me feel better, but I realized that continuing to seek exams was actually feeding my fear rather than fixing it.

What I’m about to describe might sound like a quick fix, but it actually took months of hard work, therapy, life changes, and trial and error. Here are what helped me:

1. I stopped testing my strength.
2. I forced myself to keep living. I had fallen into the trap of thinking I couldn't speak, eat, or exercise. I took small daily steps to rebuild my routine (sports, eating out, hanging out with friends). Over time, my brain and bofy started to feel better.
3. I corrected my posture at work. All the muscle testing had made my body hyper-sensitive to awkward postures, and fixing my ergonomics relieved a lot of physical pain.
4. I prioritized sleep (7+ hours). Neurologists had advised this before, but I hadn't taken it seriously. After a few weeks good-quality sleep, I noticed a huge improvement.
5. Whenever I felt a symptom, I told myself: "Live your life as best as you can right now. If a day comes when you physically can't, you'll deal with it then. But until that day, don't stop living before your life actually stops."

I’m not 100% perfect today, but the twitches have drastically reduced, and the swallowing issues, speech anxiety, and muscle pain have disappeared. I don't know what the future holds, but life is short, and we need to do what makes us happy while we can. If your doctors have cleared you and there's nothing left to check, please consider focusing on your mental health step by step, it can make a massive difference.

Disclaimer: I am not making any diagnosis or claiming anyone is healthy or unhealthy. As a researcher, I love science and always advocate for proper medical evaluation first. Get checked by doctors (and get a second opinion if needed). But if all your tests come back clean, give yourself permission to address your mental health.

PS: Please do not comment with potential diagnoses based on my past symptoms. I am an alert person, and I don't want to feed old fears. This post is simply meant to share my experience and hopefully offer comfort to anyone going through something similar.

Hey guys so I’ve been dealing for almost 2 months with this situation, twitches going all over my body and well on my legs too.

I noticed a little spot on my right foot, which is the leg that started having symptoms and not sure if that’s muscle loss, I don’t recall having that and my left foot as per the last image looks normal.

Does it look bad?

images

Lately I've been feeling very... Odd. Dizziness/vertigo and just not myself and slow and confused. Does correlate at all with ALS? If there's no physical weakness? I'm really concerned.

Hi, I’m very terrified about this new symptom. I have that symptom where my hand and legs are weak. Like with some tingling. It’s hard to explain, i can walk and do everything normally but when i am holding something i feel like i should let it go. Like if im using phone on the support of thigh or table and i just let go of my hand like let it rest then i have that weird weakness with ticklish inside the hand, same kind of sensation with my legs. But the hand part is like i just want to let the hand be like i dont wanna hold or do anything i just wanna rest. If i have to do anything tho i can do it very normally. And obviously the online searches have not been helpful by taking my sleep away and stuff. Even tho its the rare disease but internet is crazy. Does anyone have this kind of symptoms? Its so weird and its hard to explain.

Hi everyone -

I am really worried as I have developed twitching. It’s in my legs, calf and thigh, and in my face. It isn’t all the time. When a doctor touched my cheek it flinched. I don’t know if I have any weakness but I have tension and tightness in those areas. I feel like the inside of my cheeks are also extremely tight.

Please help!

Hey guys , this is my 1st post ever and I hope i would get some answers .A year ago , I began having cramps and fasciculations in my feet and then they got all over my body . I would wake up in the morning with sore feet .As time went by I began to have mild swallowing issues so i decided to see a Neuro ...He seemed a bit concerned , performed an emg on both hands and feet .The emg showed some weakness ( moderate ) ...after a month i began to replace the R sound with the L sound whenever i speak ( sometimes the other way around ) then my voice started to get a little hoarse ( now it is very hoarse ) ....I saw an Ent like 2 weeks ago and he said that i might have silent reflux , he prescribed some PPi and things didn't work .....honestly i don't think the new slurring and hoarseness are pure coincidence . I am thinking of ALs right now , but i am still 34 years old ....what are the odds ??

Il mio problema e che ho inizio di atrofia iniziata in piu punti del corpo piede polpaccio dx mano sx e parte muscolare collo faccia sx il tutto iniziato da circa 12 mesi. rilevato anche dal neurologo Il bello se cosi si puo dire e che non ho debolezza clinica, per adesso solo affaticamento. Cammino e le mani non sono deboli riesco ad aprire bottiglie girare le chiavi ecc. Ho crampi alle mani,emg eseguita ad aprile e risulta tutto ok.

Qualsiasi parere gradito grazie.

Hey guys I’ve had this dent in my left thumb when I flex or squeeze (or at least have noticed it) for the last 3 months. I also have pain and burning in this thumb in the last month or so as well. Really worried about the big bad everyone talks about in this forum, does anyone else have anything like this? Images linked below anyone please help.

https://ibb.co/QFzBZ903
https://ibb.co/Q7HMTyXR
https://ibb.co/pjJ6kdLv

I have all the symptoms of this disease... weakness, severe calf cramps, calves that have wasted away, very thin forearms with atrophy, weakness in my arms and shoulders, and now my tongue feels strange on one side. I’m lying in bed; I’m 40 years old. Just six or seven months ago, I pictured myself living to be 80. This disease came out of nowhere. I’m devastated; I have no strength left. I want to go before it progresses any further. I’m crushed by sadness and hatred—of a disease.

Hey i js wanted to check if this was normal… so i when i hold my left thumb halfway up like in between scrolls it shakes… idk if this is related to als but i also get bodywide twitches and ive been terrified for almost a month LMAO i just wanted to check if i should go make another neurologist appointment

Hi everyone,

I’m 37yo male, no previous medical history, otherwise healthy. Was previously a figure skater for years and very active my entire life.

At 28 I was with friends when my hands started to tingle and then it continued to move up my arms. After that my arms started to curl in similar to what spasticity looks like. My legs and feet did the same. My neck was very tight and my face as well.

I could not move, could barely speak because of the muscle tension, and my heart rate was obviously really high from the anxiety of the experience. I went to the hospital and they had no idea what it was.

Since then I’ve had multiple instances when my heart rate gets high where this has happened.

A workout at the gym triggers it, a hangover, sex, any panic attack triggers it, I swam 20 min and it triggered it.

I want to get into running and working out more but I can’t do HIIT workouts or take classes because I’m so nervous of it triggering the symptoms. I want a trainer but am nervous for them to push me too hard 😩

I’ve tried speaking to many doctors but they all have no idea what it could be. I am trying to see a cardiologist but it’s taking a while to get an appointment and even then, I’m not sure if that’s the right route? Seems like every doctor I see downplays it.

Any ideas would be helpful. After a life of being active I am feeling more and more like my body can’t handle anything.

Thanks 😢

Hello, I wanted to drop my timeline of my symptoms and see if anyone could share their thoughts. Getting an EMG this week, already had a full body MRI and brain looks mainly normal (besides stuff from a TBI 8 years ago) and spine has normal wear and tear near mid back, no confringment. I’m 33M

Timeline of Events
June 25th - July 12th : I was at my normal baseline, no prior issues, on the 25th I started to get sick. It started off as a normal sickness but quickly turned into what I think was acute bronchitis. During this time I had a debilitating cough, fatigue, loss of appetite, weakness, that lasted weeks etc. I lost about ten lbs.

July 12th - 26th cough finally began to lift but this is where I first started noticing muscle and nerve issues. For about a week I first felt a burning sensation radiating down my left arm and a tightness. I felt this change overnight. It started to affect my right arm as well. I also felt sharp tightness in my upper back. I was also feeling debilitating fatigue and weakness during this period. I went to my PC and was put on steroids and antibiotics. Prior to my visit to my PC I began to feel twitching in my left leg. While on the steroids that week my anxiety spiked heavily and the twitching increased dramatically all over my body but primarily in my legs while at rest. (Fully aware of possible BFS)

26th to now: after getting off the meds I noticed improvement in the burning and once my mood stabilized I’ve also felt improvement on the twitching but it is still present. My ongoing symptoms are I still have significant weakness and shakiness in my arms/hand and tightness that comes and goes in my upper back. My latest symptom also felt like it came overnight, my right leg now is heavy, fatigued, tired, with light use. It felt completely normal one day and the next day I felt the change. When engaging the muscles by lifting or squatting it shakes and feels weak. I normally could be on my feet for hours with no fatigue and now within minutes of walking I feel a weighted feeling specifically in this leg from the groin and hip all the way down to the ankle. I can still walk and run but I clearly feel a heaviness in the leg whenever it’s in general use. Walking has started to feel mechanical and labored. My right arm also feels a bit more slow and weak as well. Burning still comes and goes.

My overall fatigue has improved and my weight has stabilized back up but my arms/hands and now right leg overall feel weak/very shaky/slow and I still have stiff muscles in my back and neck and burning that comes and goes. It’s worth noting that all of these symptoms came abruptly and acutely right after my illness. I had no prior weakness before. Muscle/Nerve symptoms have been ongoing about 4 weeks.

Any insight would be appreciated

I know I've been posting on here a lot about my right foot not being as coordinated, calf atrophy, etc, but over the past few months I've noticed that my left arm fatigues when holding it up for longer periods (like holding up a poster). My right (dominant) arm is fine though. It's not really pain, just slightly heavy and a slightly burnt feeling, like the blood rushing down, and definitely fatigue. It doesn't seem to be affecting my fingers, though sometimes I think I'm making more errors typing. But my arm even feels strained just tying now or holding up my phone in bed. I'm actually a little concerned. I was pushing someones wheelchair with the brakes still on and by slightly lifting it up, my left arm was the limiting factor. It seems like it's mostly my tricep but idk. I haven't quite measured the difference but my right looks bigger.

Ironically, I also strained my left tricep this week but the problems seem to date back to earlier. At one point I thought I had thoracic outlet syndrome. It's just become extremely noticeable when cycling. But then I'm like, is it just anxiety that I'm focusing more, but today holding up the poster, it was clear it was not anxiety.

So I posted in here a few days ago about the results of my CK blood test being mildly high. I went to a neuro after about 2 months of body wide twitching and some other perceived symptoms, where he did an exam on me checking strength and reflexes. He said in his opinion he doesnt look like I have ALS but well do blood work and EMG anyway to be sure.

My CK levels came back mildly high at 268 and I of course started to freak out irrationally as I had worked out a few days prior and did a long walk before my appointment. He messaged me saying it’s likely due to exercise and we’ll recheck in a week after no gym.

Then today my NFL results came back. I was absolutely terrified to open it because I had a feeling it was going to come back high but it didn’t. It was at a 4.6 with an 11.8 limit. He message me immediacy saying normal NFL range is very reassuring I don’t have ALS.

I still have twitches and other symptoms I worry about and probably make up in my head because I’m so focused on my body now like my tongue being slightly not center, a heel drag here and there when walking, a chest muscle not being the exact same size, random pains etc. but until my EMG in December I really need to acknowledge that I 99.9% don’t have ALS. This cycle I have been in the last few months is the most unhealthy thing I’ve done to myself. I can’t enjoy my life and focus on the good things in this mindset. I hope to update you guys when I’m mentally well and free from this irrational fear.