I think I really have it

[kittykate234]

Just a quick rundown of my symptoms:

May 2021: started feeling a bit dizzy and unbalanced when walking, was constant

June 2021: got a brain mri to rule out any tumors

October 2021: symptoms worsened, started to feel like I was on a boat and bumping into things, saw a neurologist who ordered another brain mri, this time with contrast. Showed some white matter but otherwise normal

November-December: felt weakness and twitching in my legs, also would have adrenaline rushes when falling asleep. These subsided for a bit but still had restless sleep. Went to see neuro again who performed a clinical and saw nothing abnormal

June - now: worsening leg weakness, constantly scraping the ground with my feet. The adrenaline rushes are relentless, I can no longer sleep. Sleep aids don't work. The rare nights I fall asleep I wake up multiple times a night short of breath. Body feels like concrete, heavy, weak and shaky.

The sleep issues point to sleep apnea. Had elevated bilirubin, higher RWBCs and elevated inflammation markers. I'm suspecting it's weakness in my respiratory muscles and the fact it happens every time I drift off to sleep indicates failure. I saw neuro just a few days ago, clinical clean but due to worsening weakness and sleep I'm now seeing him again on Saturday. Based on the apnea and weakness I'm expecting a diagnosis of MND. I have looked online on countless BFS and ALS forums and everyone who presented with my symptoms ended up having it. I am scared but trying to remain as positive as I can. I guess I'm just posting this to gain some insight and wanted to see if anyone else has had similar symptoms that weren't the big bad.

[NoraB]

Just a quick rundown of my symptoms:

May 2021: started feeling a bit dizzy and unbalanced when walking, was constant

June 2021: got a brain mri to rule out any tumors

October 2021: symptoms worsened, started to feel like I was on a boat and bumping into things, saw a neurologist who ordered another brain mri, this time with contrast. Showed some white matter but otherwise normal

November-December: felt weakness and twitching in my legs, also would have adrenaline rushes when falling asleep. These subsided for a bit but still had restless sleep. Went to see neuro again who performed a clinical and saw nothing abnormal

June - now: worsening leg weakness, constantly scraping the ground with my feet. The adrenaline rushes are relentless, I can no longer sleep. Sleep aids don't work. The rare nights I fall asleep I wake up multiple times a night short of breath. Body feels like concrete, heavy, weak and shaky.

The sleep issues point to sleep apnea. Had elevated bilirubin, higher RWBCs and elevated inflammation markers. I'm suspecting it's weakness in my respiratory muscles and the fact it happens every time I drift off to sleep indicates failure. I saw neuro just a few days ago, clinical clean but due to worsening weakness and sleep I'm now seeing him again on Saturday. Based on the apnea and weakness I'm expecting a diagnosis of MND. I have looked online on countless BFS and ALS forums and everyone who presented with my symptoms ended up having it. I am scared but trying to remain as positive as I can. I guess I'm just posting this to gain some insight and wanted to see if anyone else has had similar symptoms that weren't the big bad.

I had MS symptoms and it had to be ruled out..

Mine turned out to be a combination of issues with my cervical spine and fibromyalgia..

Because of the damage in my neck, I can't lie flat. If I do, I can't breathe properly but I don't have obstructive sleep apnoea (I've been tested) Also, with fibromyalgia you get something known as delta wave sleep interruption..

I also have nocturnal panic attacks (adrenalin rushes)

A combination of things may be happening with you too so try not too catastrophise?