Hello,

I discovered this forum yesterday & spent a while reading various posts/threads before signing up.

I was diagnosed in Nov 2004 & have been in remission since it was treated.

During the summer of 04, I suffered with consistent ear infections. I was in a lot of pain & eventually (temporarily?) lost my hearing. I saw many doctors in the ENT department. I was in for a routine appointment one day when a doctor said it could be WG, obviously I'd never heard of it before. He took my bloods (& sent them to Australia to be tested) & admitted me to a ward. He also decide to operate the following day, putting grommets in my ears & drained my sinuses.

I awoke from surgery & still couldn't hear, I was feeling quite scared by this time.

I was in hospital for a week, during which time they gave me meds (steroids) through a drip, I had a CT scan & an MRI. My hearing improved, the pain eased, & they sent me home.

I was at home for a few days before the ear ache came back & the hearing deteriorated again. I went back into hospital for another week. They confirmed I had WG (ANCA test, sinusitis, cavity in my lung), put me on medication & sent me home.

I regained 95% hearing in my right ear, but am totally deaf in my left ear.

I had one small relapse a couple of years after, when trying to reduce medication, so slowed down the reduction.

I continued taking medication until about 2010, when I decided to stop. I have been fine since.