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Originally Posted by bny806
SO sorry to hear you are going through all of this - the first thing that really stands out in your case by far is that CK!!! that is a very high CK - even if it went down in the following tests, I would think that could potentially hold your answers - have you had a muscle biopsy?? With proximal weakness, dysphagia etc.. very much could be some sort of polymyositis, or with the rash - dermatomyositis... even with a normal adolase, that ck is impressive.. is your ANA elevated usually? (not that that really matters either, just curious)..
And yes,, I had to see multiple neuros.. i finally crashed while in the silly limbo period of we will test this... wait.... and if negative, test something else ... and wait.... then I crashed.. still technically a mystery, but LEMS is highest on the list with autonomic involvement ..
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Hi, Thank you for your response! Yes, my ANA is always 1:80 but that is not high enough to concern them (neuro & rheum). I have been worried about myositis, no biopsy done just NCV and EMG's and labs. Within the past week my CK came back normal again as well as all my elecrolytes which are always very good. Waiting for the 2nd aldolase results. Neuro always wants to blame my issues on Hashimotos, my Endo disagrees with her completely. I can go on and on, but I won't waste your time!