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 ..