Hi
I’ve been seeing the same pcp for about a year now. She is very kind and does refer me out whenever I request to specialists.
However she takes a long time to respond for testing and referrals. For those managing their condition, is it best to have an interactive pcp or does it not really matter?
Went to a hospital and was positive for VGCC antibody and EMG showed abnormality. She wanted to do IVIG or Firdapse. Thought it’d be better to try a teaching hospital who was more familiar with LEMS.
Went to U of M who wanted to redo the tests and thought it was mild MG. The MG bloodwork was negative and the titer VGCC showed .09 which they are referring to as a low positive. They also redid the EMG and did a single fiber one as well, both negative.
Now they’re telling me I don’t have a neuromuscular condition and they can’t do anything. They stated: My dysphagia may be related to GI and my breathing issue appears to be related to my lungs. The rest of symptoms (occasional arm and leg weakness, neck weakness, heat sensitivity) are unexplainable.
I’m going to try a rheumatologist next. Any suggestions :/