I m getting slightly confused I was told months ago that Ihad vasculitis but...

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  • 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.

  • *emg

  • 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.