I m getting slightly confused I was told months ago that Ihad vasculitis but...
Unless you're lucky enough to have a doctor who specializes in vasculitis, most of them only know what is in their school books.
My rheumy (who does specialize in vasculitis) sent me to a neurologist for an email last year. The neuro _knew_ (before any tests, way) I had MS. Nearly $20,000 in tests later, she still couldn't find confirmation so finally grudgingly did the emg. Made sure it was extremely painful too. Witch. Still a tad miffed.
Andy go see someone who specializes in Vasculitis. Do you live near one of the Vasculitis Centers like Cleveland Clinic, Mayo, etc?
I live in England across the pond. Luckily treatment doesn't cost here with the NHS that includes all tests and medication. I'm back at the eye clinic tomorrow (3rd) time in 7 days so I'll ask again. I'm also at rheumatology on sept 5th x
Andy do you know Patricia Fearnside? She edits the Vasculitis news over there. She may be able to refer you. Let me know if I can pass on your email to her?
that would be great thank you x
I've been being treated for an unknown type of vasculitis for 2years. The treatments work but my symptoms don't fit into one type completely. A lot of vasculitis are treated Edith the same meds. My rhumy follows symptoms and send me to the needed specialist. I've come to peace with not having a difinative diagnosis. I'd rather them day they don't know than have a wrong diagnosis. Praying you get treatment that helps you.
My Dr is the head of rhuematology at ku med and had worked at Mayo clinic specializing in vasculitis and can't figure out. Can be frustrating.
My eye doctor was the one that sent me to a rhumey. I was having Uveitis very often so he thought it was coming from something else and sure enough I have WG
Hi Andy, Pat said that she emailed you. Check your Spam if you don't see her email.