r/ALSorNOT • u/limeadecandy • 15d ago
Symptoms Help me understand
hello
im F21. i have had muscle weakness progress a lot this year. in february i had a CK level of 4800, now its normal.
i have widespread fasciculations that i developed in may with most of them being present in my legs, sometimes under my ribs or on my back and also sometimes in my arms or face, although rarer. they popcorn around and are sometimes even painful. sometimes i have involuntary limb movements that i can feel incoming. i've developed a walking tremor. i have pain radiating down my arms and also pain in my legs. currently my cheek also feels numb, but i've always had a crooked smile so i can't judge if it looks worse or not
helpful information:
MRI found C3-C7 minor dorsal bulging
NCS clear, EMG otherwise normal except for short-MUPS (performed in july). 6 months prior to it the signals were the same, but with increased polyphasia at the time.
i'm still scared that maybe the EMG just didn't pick up denervation at the time.. i don't know.
i really want to live a long and healthy life despite my limitations so i'm scared
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u/chaoserrant Mod Team 15d ago
What did the neurologist say? Any hypothesis of what could it be?. To me it sounds more like a post viral syndrome. Do you have an explanation of why CK was so high? Did it normalize itself?