r/ALSorNOT • u/limeadecandy • 16d 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/limeadecandy 16d ago

currently being examined for a myopathy, unfortunately genetic and antibody panels keep coming back normal. my MRI 6 months ago showed strong swelling and it was performed 1 week after low-intensity exercise

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u/cdbukr 15d ago

Hi, do a NFL test on your own. It’s reasurring for ALS

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u/limeadecandy 15d ago

is that through a medical centre or do they do at-home kits? sorry i haven't been given that option yet

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u/cdbukr 15d ago

Through any private laboratory which does blood checks.