Thank you ingemlb & others. This thread has explained & made me realize others suffer with various unexplained symptoms for a very long time before diagnosis. All of my problems were GI related & started in 2011. Stomach ulcers, terrible abdominal pain, reflux, & gastroparesis caused by inflammation. But no one knew why all these problems started. Drs only treated my symptoms. About a year ago my sinus problems & pain & fatigue started and/or worsened to the point that my nasal septum basically necrosed. It was gone. Just a hole where the septum should've been & I still had crusting & breathing problems. That ENT suspected WG & biopsied nose but biopsy showed non-specific inflammation & I was ANCA negative so ENT operated to rebuild septum. A four hour surgery was successful but now 4 months post surgery the tissue has died again & I've got another hole. The joint pain is horrible. My rheumatologist will let me stay on 20-25 mg prednisone a day but won't prescribe anything else to treat vasculitis until I can get a positive wegeners biopsy. I don't know what to do. We live in tx & my husband wants to take me to mayo or Cleveland clinic or somewhere that will diagnose the WG & start to slow down this disease. Any advice for me from anyone? Thank you for listening.
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