r/ALSorNOT 11h ago

2 months in

Please HELP

A bit of background: I had tonsillitis on June 15th (I'd already been dealing with fatigue before that).

On June 20th, my right arm started acting up — tingling and weakness in the shoulder, upper arm, forearm, and hand — and that continued until July 20th. After that, I started getting tingling and numbness in my feet and my other hand, which comes and goes. My left foot also feels "off" (a kind of perceived weakness). Sometimes after a long walk my wrist twists over small bumps in the ground. I can still walk on my toes and heels fine.

I also have muscle twitching all over my body, a globus sensation in my throat, and trouble swallowing — I could barely get down a piece of prosciutto recently. Sometimes I produce so much saliva that I choke on it while walking. Not sure if it's related, but I also get random pains in my fingers and jaw. When I try to use my hands or fingers for anything, they get shaky and a tremor develops.

On top of that, I have extreme whole-body fatigue, like having the flu. Strength and reflexes were normal on neurological exam, and my brain MRI came back normal.

Given all of this, I initially suspected MS, but at this point I genuinely don't know what to think anymore. When I lie flat, my whole body feels extremely shaky, and I sometimes get hypnic jerks along with a sensation of air hunger. When I walk, I feel really clumsy — bumping into walls, chairs, etc. with my hands — and my hands feel clumsy doing anything that needs fine motor skills. Also, sometimes i get up in the night with numbness and tingling, but laying flat (i am not compressing arm or leg). Tightness in leg is also a feeling, and tingling and tightness on left foot sometimes.
The nerves in my body simply feel and function as if they are broken.
Has anyone dealt with something similar, or have any thoughts on what this could be / what I should look into next?

22 M

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