So sorry to hear that. Its awful if you can't trust your docs. Is your PR3 level low, and was it low or negative when you were diagnosed? Mine was never really high, and the rheumy I last talked too said it wasn't all that reliable in measuring my disease activity, but I guess for many people it will give away if a flare is going on.
I actually had the opposite happen to me. I was diagnosed last summer, but I only had Wegs in my nose and I guess if you look at the strictest requirements for diagnosing Wegs I wouldn't have met them as I guess the nasal biopsy wasn't conclusive. So was hoping maybe I really didn't have Wegs when I was feeling so well 8 months later. Well now it attacked me in the kidney, lungs and throat and the kidney biopsy proved wegs so at least I'm not uncertain anymore. Sigh.
But please push for another doctor instead of just waiting for it to get worse.
Diagnosed 08/2013, Relapse 07/2014, Relapse 5/2017 (although early signs of it from 12/2016)
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