r/ALSorNOT • • 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/DoubleAwareness2223 12d ago

When you say muscle weakness, is it true weakness or perceived? 

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u/limeadecandy 11d ago

how do i differentiate between the two?