(Not Quite) Back to Square One

Just finished up at the Neurologiats office. They don’t think this is just Fibromyalgia for a lot of reasons. Chief among them are that many of my symptoms are far beyond the scope of Fibromyalgia. Also, whenever I’m in a flare up/excessive pain, my CK levels are elevated indicating some kind of muscle issue (“It’s not all in your head!”). ”

My doctor was also like “and when you were there you were on high doses of Prednisone” and I reminded them that “Yes, and I was also on two months of resting because I was on disability…” (and I’ve been saying the “hey, I was on high doses of steroids” thing for weeks now. 
Anyway my neurologist is writing a letter to the Mayo explaining his thoughts and observations, and asking them to take another look. He believes, like my primary care physician and I do, that we’re missing a part of this diagnosis and that the Fibromyalgia is comorbid with something.

Back to the Mayo Clinic we go…and if they won’t give us an appointment, to Johns Hopkins.