It all started last June with a bout of uveitis followed several months later by a diagnosis of severe rheumatoid arthritis by one rheumatologist who began treating me with methotrexate and prednisone.

I’ve changed doctors to university physicians now, both in rheumatology and neurology, and a myriad of testing later am taking oral cycloposphamide, prednisone and sulfa/TMP for the vasculitis and gabapentin for the neuropathy pain. My diagnosis now stands at ANCA-associated vasculitis, most likely WG, with mononeuritis multiplex.

The neurologist and rheumatologist disagree on how aggressively this needs to be treated at this point but they are working closely together. My symptoms besides the neuropathy so far have been upper respiratory and constitutional--fatigue, breathlessness, etc.

I’ve spent many hours each day researching online about Wegener’s and every symptom I’ve had to date. In fact as you might image, this site kept popping up in searches a fair amount of times. I am coping most days with bad days in between. You know how overwhelming the diagnosis of WG can seem.

Most recurring depression has been due, though, to the neuropathy especially in my hands and my inability to do any of the things I love to do best--things using fine motor skills. I was devastated when I was told I'd never get back the feeling in my left hand, distressing news to a lifelong pianist.

However, (and this is huge) I can also be a fighter and fortunately this has kicked in for me. I’d liken it to an athlete who is told he will never run again. I was determined if it was humanly possible, that I’d play piano again. Every day I exercise fine motor skills and have had more than minimal success to date. So in and through the lack of abilities I’d so taken for granted, my life has purpose and drive that I wouldn’t have expected to find through this.

It does feel lonely at times and I’m so glad to be joining this group. So on to the battle ahead!