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    Default How was everyone "officially" diagnosed?

    My doctors are disagreeing on whether I need a lung biopsy. From what I've read I understand that a biopsy is the only "official" way to prove Wegener's. But, with blood tests and symptoms two of the doctors feel confident that this is what to treat. Anyway, I'm curious how many people had biopsies for diagnosis or how many had blood tests or how else you found out! Thanks in advance for sharing

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    Bing505z is offline Banned for being a douchebag
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    They used a sample from my sinus and a sample from my lung to confirm.

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    There was no single test that was conclusive in my case. I had two inconclusive nasal biopsies and a negative ANCA test, so I did not make it easy on them. The doctors ended up testing me for everything under the sun, testing again, and finally ruling everything out until all that was left was Wegener's. In the end, I was "officially" diagnosed by a doctor who is an expert in vasculitis, based on consideration of all of the symptoms that I presented with.
    "It takes less muscles to smile than it does to frown!"

    -A quote to a doctor from me, in the hospital, while giving him a Bells Palsy smile (I was on some gooooood drugs at the time)

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    I had a sinus biopsy and a bronchoscopy tissue sample that apparently suggested GPA/wegs, but they essentially eliminated other possible diagnoses. They treated me for GPA/wegs and I got better. In our minds, it was the correct dx.
    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

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    Like Pete said, "they don't really diagnosis you as much as they rule out other possibilities". My diagnosis was based on all the symptoms I had, primarily my sinus "infection" that never went away, but also fatigue, aching, etc. My confirmation or, at least, the strongest suggestion that it was wegs was the biopsy of my pituitary. Even today, the docs can't say with 100% accuracy that I have wegs, but the evidence rules out everything else, for the most part, sort of.....

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    I had a lung biopsy, as well as a mastoidectomy. Both showed granulomas. That along with ANCA gave me a Dx's of Wegs.

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