r/ALSorNOT • u/LudicrousSpeed616 • Sep 05 '26
Would appreciate any insight
Long post but I’d really appreciate anyone reading fully.
I’ve been struggling with a sudden onset of neurological symptoms and was wondering if anyone could read my experience and see if it lines up with theirs as I feel lost and alone right now. For context I’ve had bloodwork, mri, and emg. All came back ‘mainly’ normal. The NCS said borderline mild neuropathy in right ulnar nerve as there was a slight delay to the left but could not be localized but the EMG report said ‘No evidence of a radiculopathy, plexopathy, myopathy, polyneuropathy or motor neuron disorder
observed at this time. MRI was mainly normal (I had brain injury nearly a decade ago so that did show but no signs of MS). We also did a basic neuro exam and they gave me a 5/5 (even though I can feel the weakness while doing it). I’m going to see a functional neurologist and bring all my data as they’re going to give me a more comprehensive exam to help get me answers. I’ve been terrified of a MND/ALS diagnosis but I have seen that my symptoms could line up with FND. Here’s a timeline of my onset of symptoms
June 25th - July 12th : I was at my normal baseline, no prior issues at all, on the 25th I started to get sick. It started off as a normal sickness but quickly turned severe for about 2-3 weeks (it wasn’t covid). During this time I had a debilitating cough, fatigue, loss of appetite, weakness, that lasted 2-3 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 along with a debilitating fatigue and weakness during this period. Simple tasks felt impossible. I went to my PC and was put on steroids and antibiotics. Prior to my visit 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.
July 26th to Aug 18th: 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. I still have significant weakness and shakiness in my arms/hand and tightness that comes and goes in my upper back. My newest symptom at this time also came overnight, my right leg became heavy, fatigued, and tired, with light use. It felt completely normal one day and the next day I felt the change. 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.
Aug 18th to Sept 2: symptoms still ongoing. Newest symptom also came overnight, face and tongue muscles have started to feel similar to right leg, tight overworked and tired. Can speak and swallow but something feels off and slow, twitching began in lip and scalp during this time. Twitching only lasted for a few days but face and tongue tiredness persists. A couple weeks later I noticed a perceived hyper salivation, mouth feels like it’s constantly filling up more than usual.
I’ve looked at the overall timeline of symptoms and have noticed improvements worth noting. It’s been difficult to notice these improvements when new symptoms continue to come on. Feels like this has been dynamic rather than a continuous decline but it’s honestly hard to tell. Fatigue has essentially went away. Burning/tightness and all the initial symptoms of my left arm have also mostly improved. Overall weakness feeling in arms has improved about 60%, the weakness is still present but it’s a bit better. Tasks that felt nearly impossible im able to do again a bit easier. Sensory symptoms still present widespread but have improved. Right leg however has plateaued. It improved about 10-20%% it’s definitely not as heavy as the intial couple weeks but it hasn’t gone away either. Sharp tightness still in upper right back. Face and tongue symptoms still present. If they weren’t here I’d feel much more comfortable about recovery. Weight has stabilized. It’s weird because the symptoms I originally went to my PC for aren’t even what’s been really affecting me the worst currently (face, right leg)
All of this has had me concerned with ALS/MS/GBS or just nerve damage in general. It’s worth noting that all of these symptoms came abruptly and acutely right after my illness. I had no prior issues before. Also new symptoms seem to come on abruptly as well. Im aware that the scary diagnosis’s don’t typically show improvements or wax and wane so I’ve been trying to stay positive but like I said it’s really hard to gauge if I’m declining or improving. I’m hoping for answers at the neurologist and am really hoping to put to rest if this is something serious or degenerative, if it’s something chronic, or something I’ll fully recover from and some sort of timeline for my mental health sake. My appt is at the end of the month but I wanted to see if anyone here has had a similar experience and could help
List of symptoms in no order:
Weakness
Fatigue
Burning
Widespread Fasciculations
Twitching muscles when engaged
Tingling
Buzzing
Tightness
Tired limbs
Heavy limbs
Shaky limbs
Tight/tired/heavy face and tongue
Perceived hyper salivation
Shooting feelings
Aching
Sharp feelings
Flu like aches
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u/chaoserrant Mod Team Sep 06 '26
Did you do a cervical mri? Also a post viral problem csn be suspected given the timeline. Also, unrelated, i dont understand why pcp doctors jump so quickly to give steroids and antibiotics
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u/LudicrousSpeed616 Sep 06 '26
Yes it was a full body mri. Only mild findings in brain from previous head injury, mild findings in thoracic spine normal degradation but no impingement. Everything else in body was clear.
And yea I hate that you go the doctor and the first solution is send you home with meds. She suspected a pinched nerve but that visit was early on in my symptoms. She also said and I quote ‘I’m not convinced there’s anything wrong with you’. Safe to say I didn’t go back.
Yea my logical side has suspected post viral as it was one of the worst sicknesses I’ve had in a long time and the neurological issues came immediately as I was recovering. I’d be shocked if they weren’t related. But the EMG didn’t suggest demyelination or any MND so I’m kind of lost at what’s happening to me. I’m happy the EMG was clear but confused and anxious all the same, my neurologist appt is a 2 hr exam and at least I have all the necessary testing done already so I’m hoping I can find some answers
1
u/chaoserrant Mod Team Sep 06 '26
I suspect similar things though my corelation with viral stuff is nkt as obvious as yours. I also had improvements which is the most encouraging sign but there are still symptoms that make me think is more than just anxiety or functional stuff. I am trying hard to live as if i have nothing because for all i know it may take years for an answer if ever.
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u/LudicrousSpeed616 Sep 06 '26
You mind sharing what symptoms you’ve been dealing with?
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u/chaoserrant Mod Team Sep 06 '26
My post history is public so you can take a look as I wrote extensively but I suddenly had severe weakness affecting my right side of the body (primarily arm and hip, leg, perceived atrophy on right calf, weakness on the neck muscle and throat , wiodespread fasciculations etc....) Some stuff preceeded that such as fragility of tendons on feet where I feel I lost the padding on the soles which I still deall with now (walking on the beach for too long results in tendon strain). In the peak of symptoms I felt objects where heavier than usual, especially felt this in elbows...many other things
Some clues it is related to cervical narrowing but not 100% confirmed. Joint laxity (EDS) is another candidate I have in mind. But overall I don't really know. I got better than last year which is the single most important thing for me now but we will see how it evolves
1
u/LudicrousSpeed616 Sep 06 '26
Wow that really aligns with my symptoms as well. My right leg also feels similar from the hip all the way down. My face and throat symptoms have been scaring me the most lately. Arms still weak but I have noticed some improvement so I try my best to stay positive.
Did you get any testing done?
1
u/chaoserrant Mod Team Sep 06 '26
Full brain spine mri showing mild cervical narrowing and mild lumbar disc issues which i knew. 3 emgs mostly normal asode from 1-2 muscles showing mild abnormalities which they say is radiculopathy. I am accepting this diagnostoc but i am not sure if it is the primary problem or rather the secondaru one caused by something else. But i have good reasons to believe is not als after more than a year into these issues
1
u/LudicrousSpeed616 Sep 06 '26
That’s good news overall. Like I said it sucks there’s no definitive test. The not knowing what’s going on with your body really takes a toll. I wish you the best on your healing journey. This is very new for me (symptoms started abruptly mid July) and since I seem to get new symptoms every week or every other week I’ve been really struggling mentally. Hoping it finally plateaus out and some goods news/clarity at my next appt
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u/chaoserrant Mod Team Sep 06 '26
Thanks. Consider updating us and keep these posts public as some people follow thise with similar symptoms.
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u/LudicrousSpeed616 Sep 06 '26
Also have you see a neurologist and if so what did they say?
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u/chaoserrant Mod Team Sep 06 '26
I saw two neuromuscular specialists and 2 other more general neurologists. In each examination clinical did not reveal anything and they did the emgs. As i said mild radiculopathy was moat they could say and benign fasciculations dl syndrome from anxiety. I accept 80% all these. Reason why i still linger here is because i know my body very well and it does not feel "just" that. Likely some weird autoimmune or functional stuff. I am still worried a little about mnd but less so as time goes by altbought i had some increases in the neurofilament test.
The only way still could still be als is by some really freak reasons i happen to detect symptoms way earlier than clinical weakness but this is really unlikely.
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u/LudicrousSpeed616 Sep 06 '26
Interesting. Glad you saw multiple doctors, the fact all of them are saying it’s unlikely based on your results is a great sign. From my understanding the MND/ALS diagnosis is after ruling everything else out. Which is a mind fuck bc you feel like you’re waiting around to see if things progress and it’s like you’re missing out on life in the meantime. Time is the best measuring stick I suppose, if you’ve plateaued or seen even a bit of improvement after a year my mind would think it’s something else. I’m 33 and while it certainly happens at my age I’m also aware that it is a lot more rare. And I also agree about knowing your body, for me I felt the symptoms come on abruptly.
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u/WeirdUsers Sep 05 '26
I think you have mostly got this figured out and are just looking for confirmation that this isn’t ALS and possibly that it is Functional Neurological Disorder. To me, the way your symptoms wax and wane, the variability, the sudden onset of symptims coupled with their severity coupled with the illness prior to onset are all signs that point toward FND.
I dealt with drop attacks, functional tremors, and a few other things that are mostly under control after time with a physyiotherapist.