hello from new member

[Alias]

The one regret I have about my treatment is that I submitted to a nasal biopsy. In my case it was a quite invasive procedure done under general anesthesia, and it resulted in additional scarring and obstruction in my already damaged passages. The biopsy was negative, and I learned later that nasal biopsies are often negative in patients who are otherwise known or suspected to have WG. My labs, including positive C-ANCA and PR3, plus my symptoms, were sufficient for diagnosis. I know others have had different experience, but I would caution anyone to ask carefully about what is to be gained from a nasal biopsy and if the result would make any difference in the treatment that would be offered. I think sometimes doctors order or perform procedures just because they can....

[Debbie C]

When I was first dxed..my pulmy had me do a lung biopsy and it came back positive but my rheumy, at the time, did not have knowledge of wg and did not believe that was the problem since the anca test came back neg. He thought I had a thing called 'Boop" and I was in the hosp. so he wanted my ent to do a nose biopsy and thank goodness he refused to since it was already dxed. And to this day he still thinks my old rheumy is an idiot !

[Pam C]

alaskatom,
thanks for that information. I have such night time congestion at this point, that i can't imagine doing something that will make it worse. Maybe i just need to ask for more frequent urine and blood checks, and maybe referral to a vasculitis center to get a diagnosis.

[Pam C]

Alysia,
No other symptoms, except the nasal crusting, which i forgot to mention.