Welcome to the forum, Randy!
Hope the treatment plan your docs develop works well.
Your experience sounds similar to mine. I was in good health at age 64 when I started showing symptoms that didn't respond to antibiotics. After a week at OSU, I was diagnosed. About a year in, I found this forum.
I see a Vasculitis specialist at Cleveland Clinic twice a year. She got me into remission and has maintained it. My health is pretty much back to what it was before I got sick.
One question you may want to ask your docs is how many Vasculitis patients they see. If it's just a few, you may want them to either consult with a specialist or refer you to one. Cleveland Clinic is the nearest Vasculitis center of expertise/excellence to you. If you want names of Vasculitis specialists at Cleveland, here are two: Alexandra Villa Forte, MD, (I see her - she's wonderful) and Carol Langford, MD (several folks on her see her and give glowing reports as well).
Feel free to ask questions, ask for advice, or just vent when you're frustrated. There's someone on her 24/7/365 to respond to you.
Good luck and keep in touch!
Pete
dx 1/11
"Every day is a good day. Some are better than others." - unknown
"Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD
Bookmarks