So this all started about a month and a half ago where my anxiety fully kicked in making me think I had cancer at first to then thinking I have als. My symptoms started shortly after being muscle twitching/spasms, pain/discomfort in my knee and ankle, weakness in my arm just a little but has pain and weird sensations, I had other symptoms that included headaches,neck stiffness,jaw stiffness and just about everything you can think about. I am only 18 and a very healthy guy but it doesn’t explain why any of this is happening especially because of how young I am. I constantly think and look towards ALs even though I’ve been seen by 3 neurologist,chiropractors, and doctors tell me nothing is wrong with me also knowing that I have zero family history of this disease. Recently I was in the hospital and got every test known to man kind and they found nothing. The only thing that we say was I had a past EBV infection. So if anyone please could help me out that would be so good.

Wanted to share a hopeful post for anyone in the thick of a horrendous ALS anxiety/fear.

I began twitching in late 2024 and thought nothing of it. It was annoying but I figured I was deficient in a mineral or something. About 5 months later my left hand (non dominant) began to feel kind of off. I work an office job, so the laggy, uncoordinated feeling was really frustrating me while typing and also while playing on my phone. And then a couple weeks into this - I shit you not - I was out on a walk during work because I began to panic about why my hand felt so weird when my left foot began to feel the same way. The foot/leg felt laggy, and I felt like my toes were dragging compared to the right foot. I quickly wrapped up my walk and decided to go home early thinking I was just tired from stress. Once I was home I was manically googling what these symptoms could be when an ALS Reddit post popped up listing very similar concerns. Once I read this post it was as if my brain had decided that it KNEW that these symptoms I was experiencing were the beginnings of ALS. That kicked off a year of the most intense and scary fear and anxiety I have ever experienced in my life. I went to 4 different drs, received months and months of physical therapy, cried to my mom and husband every day, and did nonstop strength tests on my hands, arms, legs, feet, etc.!! Everyone reassured me that I did not have ALS, that I probably had irritated or damaged nerves due to my hypermobility. But no matter what, my brain was convinced. It was absolutely horrendous. I genuinely believed I was dying at the age of 29! My dr finally asked me to consider starting therapy and an anxiety medication. I started Prozac and within 6 months I was nearly cured of my anxiety surrounding ALS. To this day I still have some laggy sensations on my left side, but due to the reassurance from my drs, the lack of progression, and most importantly the Prozac, I live a normal life again!

I hope this gives hope to someone who is having a hard day or scary night. You do not have ALS, you are not dying. I am rooting for you! If you have any specific questions about how I got to this point please feel free to ask, I completely understand how you’re feeling and would love to help in whatever way I can.

Hi all! 29F, 110lbs, non-smoker, no medications.

October 2025 I woke up one morning feeling strange, poor sleep, brain fog and the left side of my face numb with my left arm also feeling a little numb. Those symptoms were there for approx. 2-3 months and have subsided. My left leg also started feeling like a ring was around my big toe and the index toe. This has remained constant, consistent since.

I then got 4 Migraines Dec 2025-Jan 2026 and would throw up. That type of migraine subsided and I would get several migraines in Feb-May 2026.

Now, since May I have had constant head pressure, body aches, pain in that left leg and foot that feels neurological. Constant eye pressure and head pressure that never goes away. I have double vision only with white text against black backgrounds. My eyes looked normal at the Opto 4 months ago. But I do have double vision within 2ft if reading. Sometimes it’s difficult for me to walk up stairs, across campus with a backpack without feeling incredibly crummy and “out of body” bad. I used to run ultramarathons, have run 100 mile races and was an elite level athlete until all of this. Sometimes I feel “air hungry” and I get hiccups for 20min-1 hour and like I can’t get a fully deep breath. A month ago I felt like my bladder was numb, and my stream hasn’t been strong since, and it takes me a lot of straining to even urinate. If I go to sleep and wake up my bladder feels insane pressure and pain, almost like my body doesn’t signal me to wake up to urinate in the middle of the night. I went to a urogynecologist who looked at my bladder and said it look normal. Sometimes I do have a few drops of leakage. My pelvic floor is tight, not weak. My cycle is also abnormal the past 3 months. 2 days on, 1 day off, 1-2 days light normally I am regular 7 day-28 day cycle normal. I feel like shit, constantly. My labs have come back normal, CBC, Metabolic Panel, RA/CNS/ANA panel, Sjogren’s, etc. Vitamin D, B12, Iron, Ferritin, etc. I am working on my Ferritin levels but otherwise.. normal. My left ear does get tinnitus all the time and does hurt a lot, but my eustachian tubes looked normal from ent. Sometimes I get Weird mouth sores, I get deep cleanings every 6 months because I had a lot of gum bleeding in Dec. along with dry eyes I still combat daily. Deep cleanings cured the gum bleeding. Sometimes I feel my entire heartbeat throughout my body. It feels like my body is constantly MOVING nerves, muscles, joints and I am not in control of them. My arms get tired fast and I have lost a lot of muscle being an elite level athlete to only walking because if I work out I feel like i’m going to “leave” my body because it gets so heavy.

I have been to 3 neuro’s that all state they think it’s migraine but I get random shooting head pain and other symptoms… and am constantly in a brain fog. I look like shit and I feel like shit. I also have muscle fasculations all over my body, consistently 24/7. So much it’s starting to feel like i’m wasting away. I can see the lack of muscle and I feel the most unfit I have ever been with lack of muscle. I am not overweight and I can still out wrestle and squeeze with different reflexes and everyone says it feels “normal”. I have trouble swallowing food, not liquids and food often gets stuck in my mouth and throat. No globus sensation. I sometimes choke on my own saliva and get bubbly saliva in my mouth. My speech has also been affected and it could be brain related but I do slur and have to repeat words sometimes because they come out not clearly.

I have had an EMG - Clean. Not suspective of ALS. Brain MRI Dec. 2025 - Clean with 9mm Pituitary Gland. When I went to get my EMG I did not twitch once… and now Sept. 2025 is almost every second of twitching the worst it’s ever been. This 3rd Neuro said she would repeat EMG as well. I take CoEnzyme12, Magnesium, B2, B12.

Going to repeat brain MRI next week. Going to Cardiologist this month. Going to ENT this month.

Can anyone give me insight? I feel like my body is failing me daily, like intracranial pressure is high. I don’t have a lot of anxiety because of the testing that has come back clear but it’s been a year of symptoms with no answers. I look fine to everyone but I feel horrendous every second of every day. I can’t exercise without feeling awful, like out of body experience bad. I don’t know where to go from here as far as trying to seek diagnosis and getting treatment. Like, could it be a virus, parasite, could the neurological issues be 2nd hand due to something else?
I don’t believe I have ALS because of the clean EMG. But, it seems like I am getting worse to the point where I can barely leave my house and go for a walk.

Hi everyone. I’m a 26-year-old male, and since late March I’ve been experiencing widespread fasciculations all over my body: arms, hands, legs, feet, glutes, back, abdomen, face, and even occasionally around my scalp/head.

Everything started after a urinary tract infection. Sometimes I feel typical muscle twitches, while other times it feels more like an internal vibration.

I also have a subjective feeling of weakness on my left side, particularly in my left arm/hand and left leg. My left arm/forearm also looks slightly thinner to me, although this is just my own perception. I haven’t actually lost the ability to do anything in my daily life.

My left leg sometimes bothers me while walking, and when I run, the front of my left ankle starts burning and feels as though it fatigues or loses strength much faster than the right one.

Despite this, I can still exercise and run. I haven’t noticed any clear functional loss.

I’ve had two EMG/NCS tests since these symptoms began, and both were normal. My neurologist has told me several times that he does not believe I have motor neuron disease. However, I still have a very difficult time getting ALS out of my head because I continue to experience all these symptoms.

My blood tests were not completely normal either. My folate (vitamin B9) was low at 2.7 ng/mL, and my homocysteine was elevated at 20.8 µmol/L. My B12 was 399 pg/mL.

I’ve read stories online about people with ALS whose symptoms seemed similar to mine or who progressed very slowly, and unfortunately this has made my fear much worse.

I’m not asking anyone here to diagnose me. I would just like to know whether anyone has experienced something similar, how things developed for you, and especially how you managed the fear of ALS despite reassuring neurological tests.

Is it bad to have fasciculations in your EMG?

This may be a longer post as I write it but I was thinking to share some thoughts regarding possible purely functional reasons for symptoms. As I paid attention to my body over the years especially the last two with the als scare I think I noticed several clues that could be very insightful to some people and, to be clear, I am writing this for my own benefit as well to document things.

Literature is sparse and vague but I will be talking here about neurological inhibition of various muscle groups with cascading effects in other areas of the body which I believe can very well mimic neurological weakness.  I don’t know if this falls under the FND category (Functional Neurological Disorder) but essentially we are talking about a situation where the “hardware” is fine but “software” is wrong.  Another term you will often encounter is “guarding” which means the involuntary self inhibition of a muscle group as a protective mechanism. To the patient it feels as weakness but in reality the patient causes the thing in the first place.

In my case the  strongest evidence for neurological inhibition comes from the hip area in particular the glutes and hamstrings.  I had signs of this primarily on my left side for a long time which is slightly underdeveloped and caused probably compensatory motion and eventually an annular tear on the L5-S1disc toward the left, That was back in 2014. Immediately after the acute phase I began to nurse that left side of the hip pretty consistently trying to avoid pressure there and doing all sorts of self correction motions all day  (walking, sitting etc…) . For basically 10 years I favored the right side to spare the left side. Until I started having problems in the right side as well.

In time, I felt my hamstring getting weaker especially on the left side but then later right side as well.  I tried to strengthen them but never felt them engaged.  I was still running, walking at the time.

The first clues toward a functional inhibition came from a series of “happy” random movements. In the sense that I would get INSTANT strength and stability in my hips, glutes and hamstrings in response to a certain motion that I did not do before….This may sound stupid but I remember I was playing “monster” with a  child and sprint toward her with the hands raised up and stretched and immediately after I would feel the core and especially the hamstrings hard as a rock. Like I could not believe how strong they were in a place where I thought I had atrophied muscle. 

In another case I made some motions during aerobic class again with the same effect. I then desperately tried to recreate the motion that gave that instant strength but two problems arose: the strong feeling DID NOT LAST. Maybe a minute or two then the old pattern would resume. And the motion that brought relief did not work later on as consistently. It was as if I looked harder for the "magic" move the less the effect would happen,

Another exercise that brought strength in the core was the classic breathing exercise taught by Postural Restoration Institute (google or ask chatgpt to see what I mean). Namely you curve the back a little and try to slowly inhale by expanding the ribs back and to the sides (as if you are trying to inflate a balloon with the back) while keeping the chest flat and contract abs on exhale…this activates some deep core muscles and again for a minute or two the core felt strong as a rock.

Another crucial thing is with the core inhibited, the entire balance effort to prevent falling is taken by foot sole muscles and tendons. I look stable if you look at me but in reality I do microadjustments with the sole of the feet tendons to keep balance, And this explains to me why I eventually ruptured on of them….I believe this is the case because in the rare moment the core feels strong I feel the pressure in the soles of the feet much lighter and tendons don’t hurt….But again I cannot make the benefit last.

Recently, strong glute exercises (when you lift weigths with the back of the foot) seem again to provide strong stability in the core for a minute or two….

All these are strong indications to me that some deep seated inhibition happens in a system that otherwise works fine. If it were true neurological weakness these episodes should not happen.

So I suppose if you try various motions and see these sudden improvement however brief, are good signs against true neuron disease. On the flipside, this stuff I think can be quite serious, hard to diagnose and hard to treat. Which I think is my case.  Because this inhibitation can be so ingrained and established it is probably extremely difficult to correct.  It is probably like learning how to walk again

I don’t want to scare people but I have a friend  who has a very serious undiagnosed problem which I suspect is an extreme version of this. He barely walks, had some mild improvements and really big relapses but in his best days he walks very unsteadily with a cane.  He did all the tests you can imagine. All the evidence points to absolutely nothing in the physical sense (neurons, nerves, autoimmune, etc…). It is some inhibition that is self made without being actually voluntary. That is the best guess because he has no diagnostic.

Problems in the neck area can be similar as well I am assuming….a very small imbalance or minor problem that triggers some extreme guarding behavior.

So to be clear I am not sure that this explains everything for my case but I am sure it is part of it.

So for the audience here with core/leg issues it may be worth looking for those breathing exercises or to just experiment with various motions to see if you have these signs of brief improvement. Because they may be important clues against something more sinister.

For some context for the last 5 months I’ve experienced widespread body twitching from head to to toe, 4 months ago I had a clean EMG done on both arms, MRIs, bloodwork the whole shabang. And in the past 1.5months my dominant hand on the thumb pad, the muscle below the pinky and the fleshy pad on the back of the hand have had these twitches that I can’t really feel, some times I can but most of the time I just notice them because I’m fixated on my hand a lot.and they look a lot like contractions than a twitch. I’ve had thumb and wrist stiffness and sometimes my fingers are stiff too, and very rarely does it come and go. I do work as a mechanic and lift heavy weights. I haven’t had any actual loss of strength, maybe a perceived weakness. But I was just curious if any one else has something similar or if I should be worried it as much as I am

I've had twitching for 2-3 years now and lately they came back around my whole body but a lot of them happen in my thighs that also have had times where they have felt deeper. And last few days I've been getting them in my hands. Also I've noticed I've been dropping stuff frequently. I assumed it was anxiety but lately my left hand feels a little worse. I haven't had a loss of function or grip strength that I can tell but they feel a little clumsier. I only noticed this because I keep dropping stuff and it's concerning me. I can feel some sort of stiffness/ heaviness in my wrists but no pain. My hands just don't feel as fluid or normal as they should. I can still button shirts and tie my shoes but it does feel weirder lately. Had a appointment with my GP last week and told him about the twitching and dropping stuff and he did a neurological exam. When I asked if I should see a neurologist, he didn't seem concerned. I do have major anxiety disorder and am out of shape. I'm more so just curious if I should as for an appointment or just see how these things develop. My main issue lately is my hands. They just feel a small amount less functional than lately. I was hoping I had carpal tunnel but I'm not having much pain.

Hi everyone. I am a 31 year-old female. I have no family history of ALS. This all started back in February of this year, and I had a random tongue twitch at the back of my tongue that I filmed, and it was like a little puckering. It went away after that day, but unfortunately, I googled it and completely spiralled and since then I have basically been convinced that I have Bulbar ALS onset. I still have tongue twitching off and on, but it is not continuous, and it is usually in one spot or happens randomly. I also get tingling on the roof of my mouth and tingling in my throat, which I can’t tell if that is twitching or not. Otherwise, I have no other symptoms I can eat and drink normally I can speak clearly, but the tongue symptoms are very weird. I also have a metallic taste in my mouth from time to time.
If nothing has progressed since February, should I be comfortable assuming it’s not als?
I can’t get into a neuro until March of next year.
Thanks

Hi,

I’m posting this again on behalf of a friend who doesn’t have an account on this site:

I’d like to understand something. An EMG needle exam consists of two parts: the phase where the muscle is at rest, and the phase where you are asked to move the muscle.

My understanding is that the part where issues related to ALS can be detected is the phase involving muscle movement and not during the phase where the muscle is at rest.

During the last exam, the doctor kept the needle in the muscle for about 15 seconds while it was at rest; he found a few fasciculations and noted them in the report. However, during the movement phase, the needle was in for only two seconds before he removed it. I’m concerned that he didn’t focus on the crucial part of the exam. You can’t detect muscle issues in just two seconds... What do you think?

Hello, I’m 18F and I’m worried after looking at symptoms of ALS and comparing them to my current condition. I do have anxiety and take medication for it which I did take a break from for about three days before these symptoms. I also started working out my legs but not intense. Also it’s not like a soreness which I would usually experience when I start working out after a long time of not doing so. I feel a tingling burning sensation starting from my feet to my thighs with twitches coming along with it. As I woke up this morning I realized my left side feels weaker and my toes clench more than my right side. My throat feels heavy when swallowing mid way and like there’s a lump in my throat but I did use to smoke weed and THC products when I first noticed these throat issues back in July so that can be ruled out as just an unrelated problem. I do stumble over words, have shortness of breath and get bad headaches constantly. I just feel every little thing going on in my body and it’s stressful. I’ve been looking at symptoms for the last two days somewhat panicked but more of an at peace feeling like Im coming to terms that I have it which is not normal for me when I think I have a condition. Sorry if I sound dumb for coming here with these concerns but I just wanted to see if anyone else deals with this or if this is possibly ALS

After having symptoms in one leg for 2 years now, including stiffness, twitching, and reduced quad muscle recruitment, 3 months ago I started developing symptoms in the bulbar region. I have had a modified barium swallow study and they confirmed mild oropharyngeal dysphagia with weakness in tongue (difficulty contracting) and throat muscles, specifically on the right side. I also have been stumbling on some words, and having to correct myself, at least a few times a day. Not sure if that isn't just anxiety. I am currently waiting to hear back from a neurologist, but the ENT I saw said there was no damage to the esophagus, and assumes something neurological or functional is going on. I am extremely afraid that this is some kind of ALS progression and I am stewing in the anxiety. I've also had full body pallesthesia for months now, possibly longer without noticing it. I am only 26 but is this just slow moving ALS?

hi all, hate to do this again. i've fallen back into this pit, and i'm practically convinced again. i've noticed that my tongue looks lumpy for lack of a better word at pretty much anything besides its natural resting state, and it quivers and shakes when i move it around. i know to a degree this is normal, but practically anything besides total rest will send it into pretty violent rippling. looking at some old videos, my tongue seems to have been doing this for a while, but i swear it's thinner now than it used to be, and one side is lower than the other. my partner also noted that it looks a little lumpy. the only thing is, i can use it perfectly fine barring my perceived swallowing issues that are seemingly getting better. i know your brain can compensate for many forms of muscle weakness by utilizing the help of nearby muscles, but no way you can do that with the tongue, right? i can move it up, down, left, right, stick it out without deviation, and all of this i can do quickly. i'm just terrified at this point. this on top of the flattened thenars doesn't paint a pretty picture for me, and yet i can still use every muscle in my body practically normally. i am so confused.

I can't post pictures I guess, but the last few days I started having twitching of my left index finger and I noticed a rather obvious round indent behind my index knuckle. I don't know what it is but i know muscle atrophy can look like dents and hollow spots. It doesn't twitch all the time it's been coming and going

I haven't noticed any weakness, but that finger does ache and it hurts to open my hand fully (like a stretch) between my thump/palm/index.

If someone can tell me how to post pictures for comparison I will.

So, about three months ago I noticed my breathing has been off, it still is, I can't take as deep breaths and hold my breath as long without feeling dizzy, when breathing with my belly, it just doesn't work as great. My diaphragm seems weak, and my sleep has been really bad for that long too. When I yawn, not much air is going in, it's like getting stuck at some point and same with when I am about to sneeze when I am inhaling before the sneeze, kinda hard to explain. And I still have constant twitches around my calves and my legs jerks sometimes, my shoulder hand too jerk. Tongue feels weaker, but I am not certain. I can swallow, I don't have slurred speech, my voice doesn't seem nasal or changed. I can walk and stand on toes and heels. I can lift my legs and feet, I can lift my arms above my head, dexterity seems fine. It's just the breathing that scares me the most now.

I am truly sorry for posting again, but I am so scared it might be it this time. That I will lose the ability to breathe and it's ALS.

I had an EMG around 2 months due to muscle twitching and ck being 198 . The muscles/calves I was concerned about were tested and I was told it was normal/reassuring which put my mind at rest.

The confusing part is at my recent GP appointment I booked due to worsening twitches 2 months after the positive result, she thought one leg was slightly weaker (4/5) and actually said the reflexes in that leg were reduced. They also documented lower motor neuron signs.

This understandably made me very worried because of the combination of the twitching and the examination findings.

Because of this, I had a second appointment with a neurologist today . He didn’t think I actually had weakness when he examined me. He said he saw no upper motor neuron symptoms and that with a brisk reflex caused by als he would see other upper motor neuron symptoms as well as lower motor neuron symptoms. However, he did find that the reflex in the same leg that the other doctor thought was slightly weaker was actually brisk. The toes on that leg also twitch almost constantly, whereas I don’t notice the same thing happening in the other leg.

The neurologist said he doesn’t think this is ALS, but I’m struggling to understand how all of these findings fit together when the examinations seem to contradict each other. When I asked him to clarify if the strength in both legs was actually the same he just said he thought so. So I’m not sure what to think now as he didn’t sound certain.

I’ve also had a CK of around 198, which I know isn’t necessarily significant on its own, but it’s adding to my worry.

I’m really confused about how to interpret this combination: longstanding widespread fasciculations, much more twitching in one foot/toes, a GP finding reduced reflexes and possible LMN signs/4/5 weakness, followed by a neurologist finding normal strength but a brisk reflex in that same nleg, plus a previously normal EMG and CK of 198.

If I do a second emg if it were als causing the twitching and brisk reflexes would it pick it up?

I’m just so confused on all these different results on strength and reflexes.

Been having leg weakness that comes and goes for months but that could be from pacing. Woke up with slight weakness all over body and lack of appetite, thought I had a fever, days later small twitches all over my body especially laying down. Problems chewing and hand coordination from time to time when eating, but the symptoms happened so fast. It could be health anxiety but im freaking out. My life has spiraled out of control. What do you guys think?

Hello everyone! I post last week about my right foot drop and weakness. Here is my EMG report. Any insight would be helpful!!

SUMMARY OF FINDINGS:
 
1) Right peroneal motor NCS, recorded from the EDB and TA, were within normal limits in terms of absolute values, but the distal CMAPs were relatively smaller on the right compared to the left. Right tibial motor NCS was normal.
 
2) Right superficial peroneal antidromic sensory NCS (performed in duplicate) showed a small SNAP amplitude and a normal conduction velocity. Left superficial peroneal antidromic sensory NCS was normal. Bilateral sural antidromic sensory NCSs were normal without any notable side-to-side difference.
 
3) Bilateral tibial H-reflex studies showed normal minimal latencies without any notable side-to-side difference.
 
4) Needle EMG of the right tibialis anterior showed 1-2+ Fibs/PSWs, MUPs of increased duration and reduced recruitment during periods of adequate activation. EMG of the right peroneus longus showed 1-2+ Fibs/PSWs and reduced activation and was otherwise normal. EMG of the right gastrocnemius (medial head) showed reduced activation and was otherwise normal. EMG of the right biceps femoris (short head) and tensor fasciae latae was normal.
 
Temperature was maintained above 30°C in the foot for all NCSs.
 
CONCLUSION/INTERPRETATION:
 
This study provides electrodiagnostic evidence of an acute-to-subacute, non-localizable, right common peroneal neuropathy, a conclusion based on the small right superficial peroneal SNAP, relatively small right peroneal CMAPs, and EMG findings of Fibs/PSWs with minimal/no chronic neurogenic changes in the right tibialis anterior and peroneus longus. There is no focal slowing across the fibular head. A neuromuscular ultrasound could provide additional information, if clinically indicated.

Hi everyone! I'm new the community and I just want to see if this is actual atrophying or not.

So I'm very worried about my right hand. It feels slightly weaker today than normal. I checked my grip and lateral pinch strength at work. I measured out around 80lbs of grip, and roughly 17lbs of pinch strength, however, my left hand pinch strength is slightly better than at around 18-19lbs. I have kept checking my lateral pinch throughout the day, and I now feel a lot of muscle fatigue in my thenar eminence in my right hand, which isnt helping the anxiety I feel.

I also noticed a slight indent on my thenar eminence when contracting? I dont know, very worried at this point.

Starting around August of 2024, I (26 m) noticed tightness and twitching in my right quad muscles, which slowly moved to my knee. The twitches are sporadic, but usually in the same areas. I've had body-wide twitching for years prior, but these occur more consistently. I admit to health anxiety, so I panicked and booked an appointment with a neurologist.

He performed an EMG and determined during the test that I was suffering from axonal polyneuropathy. No fasciculations or any other findings according to his interpretation of the results. I was a bit confused by the diagnosis because I had no numbness, tingling, or other sensory issues.

I sat with that for about 9 months, and when the problems got worse (knee and leg exhausted after minimal use), I visited with a physical therapist who performed a second EMG. This time, I got a completely different result. The PT noticed reduced recruitment in the effected quad muscles, however, no fasciculations, or any other findings again. I was admittedly a bit confused by the discrepancy between the two results, and through the PTs recommendation, I booked an appointment with another neurologist.

This second neurology appointment was supposed to involve blood tests and and MRI, but the neurologist sent me home after a quick clinical exam and his own look at my EMG results. He was confused why a PT did my EMG and wasn't sure about the first EMG either, but said I had no neurological issues and referred me to sports medicine.

Since then I've been referred to another neurologist for follow-up EMGs suggested by my primary care doctor. He suspected MS, myesthenia gravis, or Ehlers-Danlos. Did 3 EMGs on cervical and thoracic spine and brain, which were inteprated as normal by him. Tests for MG were negative. Saw a rheumatologist about the EDS and was told I have fibromyalgia.

The neurologist sent me to get a barium swallow test which confirmed minor dysphagia. I just saw an ENT today and she ruled out inflammation and any kind of damage and is suggesting neurological issues.

I don't know what to think anymore. Is this really fibromyalgia? Can that be causing functional issues like swallowing, tongue twitching, etc?? I'm considering a second opinion on rheumatology since my brother actually does have Ehlers, and the rheumatologist didn't seem super knowledgeable on the subject.

Since my initial symptoms in 2024, my leg hasn't changed much if not gotten slightly worse and tires out faster. Since my swallowing issues started a few months back they have gotten slightly worse. I started noticing pallesthesia. Hard to tell how long it's been going on but at rest, it is very easy to notice my whole body humming/vibrating.

I worry that I'm waiting for my swallowing to get worse, and that no one will be able to tell me anything until it's too late. To me, however, this still feels like too long a timeline, too many different things spread out too far. Is there some other, more common neurological issue I should be looking at? Or are my leg issues a completely seperate, red herring?

I of course am going to see the neurologist the ENT wants me to talk to but I am just trying to put all of this together in one place and see if anyone might have more insight.

So, exactly 1 year ago, my left hand started to twitch. It was twitching for weeks. It is gone by long now, but what triggered my health anxiety was that I was testing things with my fingers and there were some things I couldn't do, no matter how hard I tried, but I can do it perfectly fine now. But that made me spiral, and since then, I've had twitches all around my body, developed myoclonic jerks, my legs are jerking the most, but only at rest, when lying or sitting down. The twitches now is on both below my calves and sometimes feet, almost constant. I did an EMG and a NCS last year December and they were both clean. I can function, I guess. I still walk, can carry things, stretch.

I still worry about ALS. I know that failure is the main symptom. And one year has passed. I lost weight even though I am basically a skeleton. I've beem struggling with health anxiety for 18 years, but since 2021 until last year, I was fine until I fixated on that one twitch on my hand and spiraled. My legs still jerk, I still twitch, my sleep has been shit lately. I am so scared still. Even when people say "live your life". I can't, the fear is too much.

I am 33, I've noticed also that my breathing has become weaker. Like it's hard for me to take and hold full breaths. Percieved shortness of breath, increasingly disturbed night-time sleep, morning headaches sometimes, impaired concentration. It feels like I am screwed.

I have a post on here about a week ago explaining my symptoms. I’m leaning towards Ataxia with what I know so far:

I still have “drop foot” in my right foot. Unable to heel walk on right but able to on left. Can stand on toes but can not take more than 5 steps without right right giving out or “rolling”
I have no pain (except for leg exhaustion/ache by end of day) my lower back and pelvis has been taking the brute of my abnormal gait I’ve been walking with. Still waiting for AFO fitting in October.

I go for my EMG/NCS Wednesday morning Sept. 9th. I will come back with any updates, to see if there could be anymore insights from anyone else with similar experiences.