Your having has much luck as my son Jonathan who's got Wagner's.
It's almost 4 yrs since he was diagnosed he was 14 at the time, but was 13 when he became ill. After months of being called a liar by ent because he had really bad earache, ( now he wears hearing aids because the Wegener's affected his hearing) he then ended up in a wheelchair because his joints were so badly swollen, thankfully a doctor sent him to see a specialist. With in minutes of seeing Jonathan he was rushed in to hospital. We was told at the time he only had hours to live.
Thankfully he's been off his medication for 6 months and he's been told he is in remission.
Please don't give up, you know your own body no one else does.
Jonathan specialist told us when the Wegener's is in remission it is not attacking his body, it will only do that if he relapses.
Good luck and keep us updated.
Jeanette x