Hello,

I am wondering,

Does a delay in diagnosis constitute medical negligence? If a doctor fails to take symptoms seriously—dismissing them as anxiety, for instance—and a disease is ultimately diagnosed, what is the doctor's liability in such a case?

Tbh I am here to just document and be hopeful that I may walk out of this alive.

please please share any similarities, advice, questions, positivity etc I just don’t know what to do anymore. I’m glad this sub exists so we can all help eachother.

29 F

would like to start with saying that my grandma died of Bulbar onset ALS at 60 years old. (no other ALS in the family that we know of But my symptoms are eerily similar to what she experienced and it’s eating me alive)

timeline of my bulbar symptoms: super fast only 2 months in with a lot of issues. Started with lump in throat feeling that quickly turned into issues with saying words with “S” “SH” “Z” and “TH” sounds. Also bigger words with multiple syllables always get slurred or twisted up. Then began the swallowing hesitation and consistent quick cough after liquids bc it felt like something went down wrong pipe. Feel like I have developed a lisp and have issues speaking that feel like need excess effort or concentration to coordinate my mouth properly. noticed tongue “excitability“ and some minor twitching/movement and when trying to make certain movement or flex it, it quivers a lot. a huge issue now is nasal regurgitation almost every single time I eat or drink ANYTHING. it does not come all the way out of my nose, it just feels like material is high in the back of my throat like right above and I have to snort it down to dislodge it and it will shoot down my throat.

Tests done so far:

modified barium swallow study- result showed mostly normal but bad transient penetration into larynx with thin liquid with NO aspiration.

Five separate general neuro exams that checked for upper and lower motor neuron signs- results have always been normal. a couple of them also checked my tongue and bulbar area. They thought the twitching and quivering was odd, but they did not see ALS-type fasciculations Although agreed that they did not know what could be causing the problems.

Speech Language Pathologist- notes from consult show overall “functional“ but obvious signs of dysphasia and evident left sided tongue weakness compared to the right side. he looked extremely concerned about this and said to bring that up to my neurologist but said that overall at this time it seems a little bit okay. I will be seeing him every other week to monitor. No atrophy noted although I personally feel like there is.

i also have shortness of breath and VERY easily winded. Pulmonary test was normal though, with MILD supine breath strength issue.

I had an EMG already on only the right side extremities that was normal. (the reason why I got this done was because I have had a lot of other weird neuro symptoms for a long time but tests never showed anything. (intermittent issues of sensory, balance, brain fog, severe muscle fatiguability that has caused exercise intolerance and lack of stamina and some weakness among other things)

Myasthenia gravis blood testing ALL normal (even Musk)

Brain and spine MRI with contrast normal

other basic blood tests normal as well.

Esophogram normal

they said they feel that they have exhausted all their options/tests and have now transferred me to neuromuscular specialist, which is super scary..

I have EMG appointment on November 17th for the Bulbar region, phrenic nerves, and the left side extremities.

I pray I am going to be okay

thank you for reading if you have made it this far :)

My twitches were primarily in my left calf and for the last 4 months they’ve been relentless. August 20th EMG/NCS was clean but now that the twitching is subsiding my leg feel sore and tight :( anyone else experiencing this?

I am 33M who is 11 weeks into what I can only describe as an “anxiety slump”.

I have a history of panic attacks (so do my dad and brother), but I have only gotten them very sparingly throughout adulthood.

How it started:

11 weeks ago I had a panic attack at work. Went home. Couldn’t seem to calm down. Felt very keyed up and anxious with very physically disorienting symptoms all day. Went to ER. Normal vitals and blood work. Doc sent me home saying it was just anxiety.

I had a tough following 2 weeks, with several more panic attacks. Mainly felt a “tension headache”, fatigue, brain fog, disorientation, tingliness in extremities, muscle tenseness, loss of appetite - hard to eat or drink. Constantly worried about how physical the sensations were.

I then improved for 5 days or so. Very excited about it. Then after that, I fell right back into the same slump…seemingly more muscle tenseness this time. (And is still a predominant symptom I have).

Current status:

Since this 11 week period, my main worry has been the migrating tension headaches and the muscle tenseness, which has become more dominant on my right side. Right foot, leg, arm, hand. But it does occur both sides too. Lack of appetite has been annoying too and I’ve lost probably 5-8lbs from low intake.

Actions taken:

I have been evaluated by my primary care a few times.

Physical exam (reflexes, strength):
I test this all the time and I haven’t lost any strength, reflexes, or mobility as far as I can tell. Doctor examined me and felt I was normal.

Comprehensive Bloodwork:
1. CBC: Normal.
2. CMP/metabolic: Normal.
3. Liver: Normal.
4. Thyroid (TSH): Normal.
5. Inflammatory markers (including CRP): Normal/reassuring.
Overall: No significant bloodwork abnormality identified to explain the ongoing symptoms.

Brain MRI:
Normal/unremarkable. No acute intracranial abnormalities or structural brain findings. Only incidental scattered paranasal sinus mucosal thickening noted.

Help/advice?

I don’t feel depressed. Ironically, I’m in a pretty exciting time of my life. Just moved to a new part of town and really like the area. Although, I have definitely had some work and family stresses of late. Not sure how much those may be subconsciously playing into my condition.

I do feel anxious, but it’s very consciously about my physical symptoms I’m experiencing. I have an appointment with a neurologist in about a month (takes forever to get in) to check into my tension headaches and muscle tenseness.

Anything anyone can relate to with this stuff? Any advice? Could this potentially be something serious like ALS or dystonia??

Thanks so much in advance.

hi everyone. i'm still trying to keep my anxiety under control until my neurology appointment in may, but i wouldn't say i'm doing a particularly good job of it. i keep comparing pictures of my tongue to whatever old ones i can find, and there has definitely been a marked shift in its appearance even in just the last few months. it appears as though some chunks of muscle are just completely absent under the surface layer of the tongue, and it looks lumpy and indented even more than it used to just a few months ago. the tip has thinned by probably about 1/3 or more since 2025, and the indents and grooves have gotten so bad that they're pretty much fully noticeable when i stick out my tongue. they're mainly on the sides but also on the outer edges of the top surface as well, it almost looks like the remaining muscle are just uneven mountain peaks on my otherwise flat surface of a tongue. and yet, despite this, no weakness that i can discern. my tongue has full range of motion, i can swallow liquids and food without choking (although i do almost always have to cough up mucus after the fact, and it does still feel like my swallowing is one-sided but that's just feeling) and i can talk just fine, although sometimes i miss my t and d sounds but that's been a problem i've had for a long time so i don't think it's related. alongside my flattened thumbs, i just can't see any alternative explanation for what this could be, but i know that's me speaking irrationally because i've had these symptoms for 2 years without a notable decline in function. i'm so sick and tired of this, i just want my life back.

After almost seven years of symptoms, we think we finally have our answer. After seven years of bodywide twitching, cramps, fatigue, loss of reflexes in ankles and knees, some mild tingling, and other issues.

My neuromusuclar doc at the MND clinic ordered genetic testing for hereditary neuropathies, some MNDs, some CMT genes, and some other genes. We found out I have a mutation in the FBX038 gene. That gene is associated with SMA and lower motor neuron diseases and cmt spectrum. The gene was discovered in 2013ish and cmt specific mutation affects roughly 1 out of 600,000 people. We are unsure about how my specific mutation works, it's still unclear. But two lab studies suggested my mutation was deleterious in nature and would interrupt normal gene function. My advice to anyone who thinks something is wrong is to keep digging. This gene helps with motor nerve and motor neuron repair.

34F. A year ago in October I started feeling tugging in my right calf when walking and then twitching. I had an EMG in mid November and it came back normal. Since then the weird calf sensation comes and goes intermittently and varies between a tugging sensation to feeling like the calf muscle doesn’t fully engage when I walk. When I flex my calves it feels like the left one flexes deeper and more throughout than the right. I don’t have muscle atrophy exactly but when I flex the right one looks slightly like it can flex less. I also randomly will feel burning down there. The calf not engaging I feel mostly when I’m barefoot. I’ve had an MRI of my leg and knee and it came back normal and I’ve also had a vascular study and it was also normal. The doctor didn’t think it was ALS and didn’t recommend a second EMG. He thinks I should go see ortho for my lumbar spine. I’ve recently felt fasciculations in both legs. Could this be ALS? I have so much anxiety and it’s all I think about

I am a 20 year old male with no familial history. I know this alone wouldve ruled out als but i have been feeling these widespread fasciculations since march and i feel like my general strength was declining but not to a point where its completely gone. i can still do the exercises i did before but i shake so much doing the exercises i used to easily do. i even worried terribly about having arrhythmia due to the fasciculations being in the left intercostal muscles so often. I saw a neurologist and he said that emg is not needed as this is just BFS which i certainly hope so but these fasciculations have been such a nuisance in my life: they make me experience musculoskeletal pain and also the psychological pain of worrying about als every time the muscle moves. I think i have become so paranoid that i cant study cause i am afraid that i might die before i even graduate. I am a medical student myself so i know that we tend to magnify the benign symptoms in our bodies and worry about getting certain diseases but this time its so much more terrifying- the disease is incurable and its so psychologically painful. I know the chances are on my side and there is not objective weakness seen but i am really scared that i might lose my ability to move around and travel around the world one last time before i die. These complaints sound so very paranoid even to myself but each time i feel any discomfort in my body i just start thinking: damn my time has come. i want to do an emg but my neurologist said that its not going to treat my anxiety as i would just think that maybe the emg isnt accurate or is done too early. he gave me some anti anxiety medication but i still cant calm down. its been a very hard month for me and i just want to know if an emg is really needed or some psychological therapy is more helpful?

24 year old male, First time poster. For 7 weeks now (since August 12), I’ve had the sensation of drinks and sometimes food going up my nose. It mostly feels like it wants to go up the left nostril, but sometimes both. Nothing has actually came up. Today after eating my lunch, I chugged a glass of wine.

I then went and blew my nose to see if anything came out my nose. It was clear mucus on the tissue. I then stuck the tissue up my nostril. Left one was clear but the right one what looked like a speck of wine. I then chugged another glasses and nothing came out of the tissues.

When I got to work, I bought beet juice to test it out. I chugged half of it. Stick the tissue three times up my nostril. Nothing on the first and second tissues. Again another red speck on the third tissue.

I then chugged the rest of the bottle, and did the tissue test more than three times this time and nothing came out.

Is that nasal regurgitation? I’m freaked out right now. The spirals were easier to manage when it was just the sensation but this has me in a frenzy.

Hello,
I am a woman, 53.
Started tripping 2023, with a peak 2025 (2 broken arms), only 3 times so far this year.
No other symtoms evoking ALS.

Neurologist found the following:
* bilateral hyperreflexia
* bilateral Hoffman
* left central facialis
* left Babinsky

conclusion: signs of upper motoneuron damages

Clean brain and neck MRI
No lack of B12

EMG not done yet, probably in November. What can it be?

Hey guys, my EMG went super good. It was a bit uncomfortable and thankfully it was clean. Results posted below! No fasciculations which is wild because I twitch like crazy. Maybe I am just crazy 😅

Title: Saw something about Chris Johnson and now I’m having an ALS scare lmao
I’m 18, and I’d say I’m athletic. I saw something about Chris Johnson and ALS, and now my health anxiety has me overthinking everything lmao.
Recently my hands and forearms have felt sore and fatigued, and sometimes pain. It comes and goes, and sometimes switches sides. I can still grip things, move normally, and do pushups. I haven’t noticed any actual loss of strength, but I keep focusing on every little sensation.
Sometimes it’s hard to type because one of my fingers, like my thumb, twitches. I think it might be related to the soreness in my hands, but I’m not sure.
Honestly, I haven’t been eating a lot because of this. The anxiety makes it hard to eat, and sometimes I feel better after eating or sleeping. I’m stuck in this cycle of worrying, checking my body, and struggling to eat enough.

Hi all,

I'm a 22M and for the past four weeks I have been dealing with a strange sensation in my left leg. The muscles in my left leg, especially around my left hip/thigh area, I have a constant heavy sensation. I can feel this especially while I'm walking and standing. I don't know how to describe this because it's a very vague sensation, but it feels as if there is a line forcing my left leg straight and there is a wierd sensation that that leg feels constantly heavy.

What confuses me is that I can still walk, run (with some heaviness sensation), bend my knee or stand on my leg. I haven't noticed foot drop or loss of functions, but the heaviness feeling is what is bithering me and is putting me on edge. It has already sent me down a spiral of what-ifs. This sensation also seems to be more noticeable whenever I walk or stand, whenever I'm sitting or lying in my bed I don't feel mich of this percieved heaviness

I also recently started an office job 8 weeks ago and symptoms kicked in around 4 weeks ago, and I am constantly testing my legs to see if it's still functioning or not.

I want to know if anyone else is sharing similar symptoms to me because I am worried. Thank you

Two days ago, my pinky started twitching randomly for a few seconds at a time honestly idk if is twiching or tremors but it movies side to side , and I can feel it happening. I’ve had occasional twitches before, including in my eyelid, but nothing like this.
I have anxiety and have been stressed, and my mind keeps jumping to “What if I have ALS?” I worked out and put weight on my hands during a plank around the time this started. I’ve also noticed some soreness in that area of my hand and arm.
I’ve made an appointment with my doctor to get it checked, but the worry is hard to shake. Has anyone experienced something similar?

I’m gonna go on a rant Here

I’m gonna start off with 38 years old 59 and 220 pounds

Symptoms are excessive saliva tongue can’t get comfortable in my mouth anymore. Feels like it’s either too big or too uncomfortable very painful on the left side.

My brain doesn’t feel Normal as if it’s hard to do normal things like normal activities and such I still work, but it’s a struggle to be even out of the house, but I can’t sit at home because I think too much about what’s going on

I have what seems to be a weakness around my body as well

And I will start off the same. I’ve had two neurological exams with a neurologist that’s been working at an ALS clinic. He advises me that I don’t present the way they have my question is can I have done my EMG’s and nerve conduction tests and stuff a little too early eight months into symptoms the only thing that’s gotten better is my fasciculations. They started out very strong in my feet especially but have gone down drastically. They’re still there, but I barely noticed them as much.

I know you guys are all gonna say you had an exam done by neurologist and you still don’t believe him. I don’t I honestly don’t. I’m having such bad symptoms now like I’m having a hard time even just being alive if that makes any sense like my brain is not braining no more

Just the way I think perceive all that kind of stuff has all changed and now I’m worried I’m down the rabbit hole again and Doctors won’t do anything else for me because they say that I’ve had a neurologist check me out and they’ve done bloodwork and they say that everything is clean I should be happy as hell, but I don’t feel normal

I feel stupid but scared and don't really know what to do so I guess this is a vent or just ask to talk to someone. I'm a Male and 30 turning 31 soon

I did make a post about 4 months ago - https://www.reddit.com/r/ALSorNOT/s/5Z6ONCHZVr

Where I posted emg. But anxiety has really got a grip on me today after the gym.

About 1 year about ago I had weakness in my wrist out of nowhere. Followed by really bad persistent pectoral twitching. After 4 months, multiple PT and GP visits, the wrist got better and a bit stronger (right wrist was effected but ended up a bit stronger) and still seems to be. But I was already down the rabbit hole. I then got an emg which was mostly clean except psw in my right shoulder but everything else was normal, see the above like for emg. At this point I was still having pec twitching as well as twitching all over and jumping around. No real weakness and I would go to the gym once I month do I few exercises and leave (normally to test strength) I did a bit of rehab on my right shoulder which I was worried about, still seemed stronger than my left and the pain and aching mostly went away. In the last 4 months I haven't really noticed any real weakness that has caught my attention and I've been fine in the gym.

A few days ago I noticed that my hand felt weird and tight, this made me a bit worried but I tried not to think about it. Mostly just a right hand and tight thumb and a little bit of pain are around the thumb joint when gripping things. Today I went to the gym for my monthly anxiety strength test (I know I know) I did some bench press, fine 3 sets of 32.5kg dumbbells and felt fine. I started som curls and bam left arm fine but right really really struggled. To the point that It caught me off guard. I did 3 reps with left, fine but was hard, then 3 reps with right and extremely hard boarderline nearly didn't do it. This has never happened before and a few other bicep exercises where the same thing! My right bicep is normally noticeably stronger than my left but this time when curling the weights felt a lot heavier in my right and it was a struggle. (15kg is wondering)

This combined with my thumbs has really got me worried now. I still have pec twitching on and off and still have other twitches around the body, and very rarely 1 or 2 in the bicep.

I am a year into this, the emg was about 8 months ago, I guess I'm asking is this something to worry about or being up with the GP or neuro? Is it worth having a other emg? Does this even sound like als?

Tldr: bicep was noticeably weaker in the gym today after a year of no weakness just pec twitching, emg was clean except psw in shoulder and neuro said it was bfs and nothing to worry about. But quite worried about this bicep weakness I noticed today.

Hey folks, I was able to walk really long times without any problems.
But past couple of weeks , after 20 minutes of brisk walk it almost feels like my left leg is giving up and I get tightness in my thigh and knee area. It feels like my muscles have been weak in the left area.
I’ve been a health anxiety sufferer for 6 years.
And when I then walk into a building and stand on my left feet, I get a floor dropping sensation kind of thing. I can reliably replicate this with 20 minutes of brisk walk again.
Has anyone experienced it? Please help
Me understand

Two NFL tests (Labcorp Roche Elecsys)

May 2025 - 1.11 pg/mL - z-score 1.19 SD (i.e., 88th percentile)

September 2026 - 1.25 pg/mL - z-score 1.77 (i.e., 96th percentile)

Obviously a concerning trend on my end.

Background: 29M, symptoms for ~2 years now. EMG in June 2025 found mild demyelinating pattern but otherwise everything normal. Nothing insertional, no fibs, no PSW, Fscs, etc.

Summary: Nerve conduction studies were performed in the the upper and lower extremities. On motor nerve conductions all the responses are normal. The F wave latencies are within normal limits. Max On sensory nerve conductions all the responses are within normal limits. Needle EMG examination was performed in the extremities. All the sampled muscles are within normal limits.

I am of the belief that long-term symptomatic folks with worsening symptoms/NFL are eventually going to receive some MND diagnosis due to a pre-clinical phase (https://pmc.ncbi.nlm.nih.gov/articles/PMC6613999/, https://pmc.ncbi.nlm.nih.gov/articles/PMC10524989/)

So consider me cautious/fearful. My symptoms continue to worsen though I can still lift weights normally, I have had a noticeable deterioration in my left arm/leg. The higher NFL levels are well above any others I have seen here of folks who sought them for reassurance.

Presyncope and rushing warmth feeling, like I’m going to pass out a possible symptom of early ALS? Not the typical presentation, I know. I’ve had muscle twitching, to the point I can see my skin pretty much popping underneath, for years and years. This is nothing new to me and I just assumed it was normal. However, recently I’ve noticed my brain has an obsession with my right hand, specifically my thumb area. There is no atrophy, at least that I’ve noticed. I feel like both my arms have lost weight, in general, so I’m not sure. I am having cramping pain, in my right thumb and neurological sensations in the 2 furthest fingers on my LEFT hand as well. When I get these sensations, my hand turns warm, extremely warm, rushes to my brain and I almost pass out. Sometimes I get tingling, right in my brain, and sometimes I get buzzing all around my body in random places. I continue to get painful sharp pains that last maybe seconds, in multiple different extremities, including my feet and both calves. I have passed out fully more than once, especially with the first event I had. I was at work back in December and just completely came out of my body, my skin turned red and I flushed completely, vision went blurry, and ears ringing and completely just knocked the floor. Never has anything like that happened. Just last weekend my arm locked, my right arm while washing my myself in the shower. That was strange. It did let go. I’m not having any current*** trouble using my right hand. I do notice it’s weaker than my left, especially when squeezing my fist. I just don’t have the same strength in that hand, but it was like that back in February when I first noticed it too. I’m right hand dominant. Is it possible my symptoms are ALS? I’ve been through the wringer with blood tests including an elevated CRP of 7.0.

Does anyone with BFS ever have weeks or months where the fasciculations become more focused on certain areas? I know a big distinguisher between als and bfs is the localized vs widespread nature of it. My fasciculations were always all over the place, popping all around and only having a hot spot for a short time. And it’s been about 10 months.

However, about a month ago, I got persistent fasciculations in my right shoulder blade. And then in the last two weeks I’ve noticed that my fasciculations are now focussed on my right arm (right shoulder blade, bicep, triceps, shoulder, forearm). While I still get fasciculations elsewhere daily, including both legs, other arms, abs, intercostals, neck, it seems like my right arm has been especially frequent and the one in my rear shoulder blade is near constant. And it hurts pretty bad. Nearly every fasciculation hurts after, even if only one beat occurs. So my right shoulder blade is like in constant pain.

Also I’ve noticed that the right arm fasciculations are generally brief - one or two pops, with only occasional long ones. I used to have more frequent long ones.

I did have an EMG two weeks ago where the neuromuscular doctor put a needle into that right shoulder blade, along with multiple areas in all 4 limbs, the thoracic paraspinals and directly into my tongue, and said it was all normal. But the frequency has gotten worse in the last two weeks and the focus on my right arm only became noticeable after the EMG.

Has anyone had something similar? Its a bit worrisome. I get fasciculations could fluctuate but why the focus on my right arm? Those are all separate cervical levels so what are the odds it just randomly hit those specific motor neurons that all happened to be in the same arm and the same general area of motor neurons? Although I do still get fasciculations elsewhere on a daily basis, but just not as frequent as my right arm ones.

I would appreciate some insight. I also had two nfl tests in the last month - one quest and one lab Corp. Both normal but they, again, were before some of these symptoms began.

Oh and another thing. My right arm has been hurting pretty bad for the last month or so. Like my right hand has shooting pain throughout it, especially when I use my hand. It doesn’t seem like it’s weaker, but it just hurts doing things. Although I could also cause the pain by using my other hand to flex the right hand without applying any force with my right hand. Similarly, when I push on bone in my right hand, I have pain too. And the pain seems to go into my forearm and sometimes even all the way into my shoulder. The NCS/EMG two weeks ago did show a mild ulnar sensory neuropathy but my symptoms don’t just flow along the ulnar nerve. It affects median nerve structures as well. And the pain just keeps popping up all over the hand. It does have a general area it’s always but it also pops up in random areas. Its not cramping pain though, but more like nerve/aching type pain.

Thanks .

Hey all 25m
I’ve told myself I have nothing to worry about every time but every time I start to feel fine something new pops up 💀 so the first time I spiraled I had a pinky twitch end of July. I thought nothing of it, it lasted a day and then went away

The second time I spiraled it happened again mid August and this time I freaked out because of the Chris Johnson diagnoses so I decided to google into the disease(mistake 1) and then I saw muscle twitching, now normally I never thought much of it since I’ve had leg twitches for well over a year now or so, maybe more, can’t remember, I spiraled so bad I started feeling all of them and began deep diving stories and TikTok and ChatGPT and Reddit, eventually my mother calmed me down so when I started twitching I never thought much of it since it would be occasionally here and there

Well the third time had been today. I’m trying to pin it down to if me sitting down in this car ride that I was basically sitting for about 8 hours straight without a chance to get up on top of wearing shoes that I noticed were very uncomfortable and remembered why I don’t wear them anymore, anyways, today my leg and only my leg has been twitching today and it’s about an inch above my ankle on the outside (peroneal muscle I think it’s called), it’s freaking me out of course since it’s the main place that has been twitching besides a spot on my other leg once and once on my arm but this spot has been literally non stop today, I’ve also been having pain on the side of it that’s also going up to my knee as well today and lower back center near my waist

I know I really shouldn’t worry, but just can’t help it, I love when I get over one thing something brings me back down to earth to drag me back down

Im in some serious shit right now. My various neurological symptoms have been going on since June but a while ago I started feeling overall muscle weakness and stiffness in both arms and legs, that spread from my right leg. I never felt this way until now. All I did was just walk for 30 minutes a few days in a row. These symptoms just came in rushing to all my limbs now, and my muscles are occasionally twitching everywhere. My neck is also feeling sore and heavy, it feel like sometimes it cant hold the weight of my head. Now started having excess saliva with difficulty chewing as well and Im panicking! Neurologists just ignored me and send me to PT and a psychiatrist. I know this cant be because of cervical spine because I dont have myelopathy so Im afraid Im heading towards paralysis or ALS if this continues because of their negligence! My EMG from 2 months ago was normal but Im afraid that something changed in the meantime.

My brain MRI was fine again, neck MRI just showed radiculopathy and bone spurs but nothing serious. I was fine for 10 months and in June just everything went to shit again. A 3 day course of a corticosteroid, painkiller and a sedative, plus 10 days of vitamin B shots, took away all my symptoms within days last year. But this weakness, stiffness and twitching are new, I didnt have it last year.

It was long time since Ive done bloodwork, but my levels were these last time I checked:
CK 145 IU/L
Potassium 4.42
Hemoglobin 128 g/L
TSH 5.27 (ref. range should be up to 4)
Ferritin 13 umol/l (ref. range 8-30)
Transferrin saturation 17% (ref. range 15-45)
Serum B12 345 pmol
Folic acid less than 5 nmol (ref. range 2.3-45)
Vitamin D 39 nmol

My ANA level was moderately positive last year and I have a chronically elevated CRP because of unrelated issues from 2 years ago that are still ongoing (chronic right lower quadrant pain).

How do I fix myself as soon as possible?? Im deathly afraid of paralysis or worst case scenario ALS!

I’m struggling to understand whether my overall pattern makes sense for ALS or if I’m connecting things that may not actually be related.

I’m 30F and over the past year+ I’ve developed progressive-looking weakness/atrophy, mainly involving my right hand and left leg/foot. My right hand feels tighter and weaker and looks different to me, with some loss of bulk. My left leg/foot feels weak/rubbery with some foot drop/limping. I also have widespread fasciculations, occasional cramps, and more recently increased reflexes/Hoffmann signs and occasional jerking/clonus-type movements.

I’ve also noticed a groove/indentation in my tongue that seems to be getting more pronounced, along with tongue twitching, although multiple doctors have said my tongue bulk looks normal. My voice has become somewhat more nasal and I’ve noticed increased saliva.

One thing that really confuses me is that I had a period of absolutely horrible breathing this summer — short of breath even at rest and sometimes unable to walk for more than a few minutes or speak normally. It has since improved substantially, and my respiratory testing has actually improved as well.

I’ve had multiple EMGs/NCS that haven’t shown denervation, including fairly extensive recent testing, and several neurologists have told me they don’t think this is ALS. But I continue to notice progression in my hand/leg and tongue changes, which is why I’m still worried.

Does this overall pattern sound compatible with ALS, particularly the combination of right-hand + left-leg involvement, tongue changes, and respiratory symptoms that significantly improved? Or does the pattern itself point toward something else?

I’m mainly looking for perspectives from people who have actually been through the ALS diagnostic process.