Ok so now I'm back to where I was a year ago. Today was my third visit to the rheumatologist and I told her my symptoms seem to be returning since tapering down to only three mg of prednizone. My head feels loopy and I have dizziness and weird visual things .... but she said egpa does NOT affect the central nervous system.
She also says that my ANCA tests have always come back negative and that although there is ANCA negative egpa, the ANCA should be positive during a flare up of the illness, which mine isn't if this is a flare up.
So we are left with not knowing what the heck I do have. She says some hypereucinophilic syndromes have really unusual symptoms. She does not believe I actually have any vasculitis. She thinks my brain damage could be due to the blood flow being blocked by too many eucinophils. My new respirologist believes I have actually had vasculitis for a long time and he says I meet all the criteria for egpa. My rheumatologist says I don't.
So...the plan is for me to have another bunch of blood work done, then take a large dose of prednizone (50 mg) for seven days, then 25 for seven days , and then see if I feel better. Meanwhile she has ordered another MRI of my head but it will take three to six months to happen.
My rheumatologist seems through. She has explained that there is lots of overlap between these conditions. She has also said that all my inflammatory markers are looking better than they did six months ago so it is not adding up. She wonders if the prednizone and azathioprine are making the blood look better than it is. She says that egpa patients likely feel pretty crappy all the time but they don't have my symptoms.
I just want to get better.