r/NeurologicalDisorders

I have done an EMG, brain MRI, EEG, checked vitamins, electrolytes, minerals, ck, iron, cortisol, TSH, etc all normal.

Symptoms in order:
Started early last summer with shortness of breath, then followed by neck getting slightly weaker, then upper arms/shoulders, then arms/forearms, then thighs/legs, after this I started experiencing fasciculations everywhere, I also started getting more stiff in hands/neck/shoulders and more frequent hiccups. All this happened under the span of 3 months, and has now progressed fairly fast, can still walk, use hands etc but im weaker. The biggest problem I have is my breathing, its fairly difficult to breath while laying flat and I feel the need for bigger breaths.

If anyone has a clue on what this could be please write it down, im really desperate to find out the reasoning behind my symptoms!!

I’ve been reading some studies and it’s a small group of people on record. I can only imagine there being more people who are suffering from micro-CNS damage from viral inflammation attacks, especially with covid.

There are people who experience an inflammatory attack, and even years later do not return to their normal baseline. Things remaining such as testing a positive wartenberg’s sign, with clear EMG/NCS and negative tinel’s test showing no peripheral nerve/muscle involvement. Or full body micro-movement rigidity, loss of fluidity and stability in movements, or the new experience of random muscles throughout the body twitching on their own. Or hyper excitability of the spinal nerves in the cervical spine such as showing positive Lhermitte’s sign while at the barber as the razor goes past their spine, causing their head to involuntarily pull upward while tensing and shaking/vibrating at the cervical spine. Some people experience much more drastic outcomes from post-viral inflammatory attack such as requiring hospitalization. However my interest lays among the quieter population who must be walking through their lives suffering each day, not knowing what’s wrong or how to help themselves.

It seems to be affecting the body in similar ways such as Multiple Sclerosis, though just on a much smaller scale that is harder to perceive on standard tests.

Some tests have been used such as DWI, MRS, and T1W/T2W whole brain myelin mapping technique as well because some patients have found micro-damage in the brain. Other than that it’s been a complete toss up if standard MRIs of the brain and spine end up showing anything, even though the inflammation and micro-myelin damage symptoms are present.

What do you think is the way forward for helping these people?

I would guess first to manage any lasting system-wide inflammation and neuro inflammation. But to help micro damage of the spinal cord?

I’ve been dealing with a cluster of unexplained symptoms for almost 3 months and I’m starting to feel stuck and overlooked. I’ve seen GI, rheumatology, neurology, ENT, and ophthalmology. I’ve also been hospitalized multiple times, but I’m usually discharged without clear answers.
At this point, I’m struggling with daily functioning — some days I can barely walk because of numbness and weakness, along with frequent “flare-ups” that come and go.

Tests so far:
Extensive bloodwork/labs normal
Endoscopy + colonoscopy normal (minimal nonspecific findings)
Mouth ulcer biopsy (inflammation but not diagnostic)
Other workups haven’t shown a clear cause
I also have celiac disease, but doctors feel it’s unlikely to be related since I’m very strict with my diet and there’s minimal inflammation on scopes.

Main symptoms:
Severe fatigue and post-meal crashes
Dizziness, shakiness, near-fainting
Numbness/weakness (sometimes limits walking)
Chest pain
Nausea, bloating
Circulation issues
Mouth ulcers + gum sensitivity/bleeding
Hot sweats
Consistent bright green stool
Episodes that feel like “flare-ups”

I’m also having daily seizure-like episodes where I remain conscious, lasting ~20–30 minutes. Neurology mentioned possible FND, but nothing is confirmed.

I keep wondering if this could be multiple things happening at once rather than one diagnosis, or something being missed. I still wonder about Behçet’s, but it was mostly ruled out because my ulcers are only in my mouth.

I feel like I’m losing function and not getting closer to answers. Has anyone experienced anything similar or have ideas on what else might be worth investigating?

Had my 3yr brain MRI Yesterday l, they found I have decreased size in my left hippocampus from mesial temporal sclerosis. On top of that they’re now finding that I have VBS with compression of my of my brainstem. I thought the Left temporal lobe epilepsy was enough. Just keep swimming guys!!!

Truthfully, my Traumatic Brain Injury is what led to this diagnosis. I wasn't prepared.

However, it is not as bad as it could be, right? The DSM-5 official definition is "Major Neurocognitive Disorder due to a Traumatic Brain Injury".

This is located under the umbrella term of "dementia"

What happened was that almost 9 years ago, I was struck by a car. It put me in a coma for 3 months and I was wheelchair bound afterwards. My collarbone, hip, rib, and tailbone—all broken. My lung collapsed. I had a 10% chance of survival.

I digress. I'm sorry I have issues keeping my thoughts straight now. But I feel like this is essential, since I'm giving context.

Tldr; my condition classifies as dementia and there is a lot of stigma towards it, probably because of ableism and it was caused by a car crash.

My father is 77yo. He got diagnosed with ocular Myasthenia gravis 3 months ago, which has now moved to include weakness in chewing.
- He is on Azathioprine (Imuran) 150 mg per day and Steroids (Prednisone) 10 mg per day.
- He has developed loss of appetite since last 1 month, which he attributes to reduced sense of taste.
- He is unable to taste salty food at all, where as his taste for sweet food is reduced. This is drastically reducing his oral intake.
- His sense of smell is preserved.

Has any of you experienced loss of taste? What was the underlying reason? How did you fix it?

Thank you

P.S. He has also developed severe central fatigue since last 1.5 months- individuals muscles don’t fatigue, but he feels extreme tiredness.