UGH! Mayo wont take me without a "real PCP" AND an diagnosis. That baffled me. The reason I wanted to go to Mayo is because I cant seem to find a doctor familiar enough with what's going on with me to commit and verify a diagnosis and treatment plan. My Allergist is awesome and would give me the Rheumatologist referral but something on paper has to support the referral. I asked the him to run a Myositis panel including the specific anti-bodies for IMNM but he ran a basic panel which did not include the specific HMGCR antibody test so my panel was negative. I think the HMGCR is a send out. I also asked him to run a CK as that measures muscle damage and supports Rhabdomyolysis but the tech ordered a CK-MB which is specific to cardiac muscle damage and would not be elevated in Rhabdo. The CK peaks in about 24 hours and starts to decrease after that. By the time I figured out they ran the wrong test my levels were going down again.
So I gave up for now. I'm just taking prednisone to help control it and riding out the 3 month recovery period and hoping there are no more flare ups. Hurry up and wait UGH!