I have been a long-time lurker and finally joined to ask my question! You guys and gals seem to know more than the doctor's about this disease
Wanted to see if this sounds like anyone else's presentation.
My biggest complaint is with an overwhelming fatigued feeling in my arms and sometimes legs. It comes and goes. The best way I can explain it is it feels like I did 100 arm curls and now my forearms just want to rest in my lap. Or sometimes if I'm driving with one hand up on the wheel it will get tired feeling so I'll switch arms. My arms don't just quit working it's more of the feeling of tired muscles. The other day it was in my thighs too....I could still walk around and do things but they felt really worn out. Only for an hour or so and then it let up. I had this happen several years ago too and a neuro found some myopathic units in my shoulder blade and thought it was possibly a mild dystrophy of some type. Then I proceeded to have 2 more kids and was either pregnant or nursing for several years with no symptoms. My little guy is almost 2 and my symptoms are back again. CK is normal. Basic labs are all normal. New EMG is normal (even in shoulder)...some slight myopathy showed in my leg but I had had a previous compartment syndrome and surgery so they attributed it to that. One nerve was tested with a rep nerve stimulation and it was normal. All labs have come back ok....my ACh blocking was 23 with 0-25 being normal. I don't know if being a "high normal" means anything at all?! Musk bloodwork was not sent out correctly so it is being reordered. The only eye involvement would be I've been told many times that my eyes "look tired". I'm wondering if you can have a slight ptosis and not even really notice? If anyone has read this far, Thank you so much! Limbo land is very frustrating and when I have good days, I start to think I'm crazy until the symptoms come back!