I have been viewing the forum for a long time but this is my first post. First off, compared to everybody here I am fairly healthy and I am very thankful for that. I was first diagnosed in 2014 when I developed epischleritis. After 9 months 8 doctors 4 who were opthalmogists, 1 rheumatologist and 1 cardiologist, the last opthalmogist I saw tested me for C-ANCA which was positive. This was in 2014. I believe I had been sick for a quite a while as months before I developed eye symptoms I remember standing in more horse pasture thinking. I am too young to feel this tired. I had no energy or stamina. I saw the first rheumatologist prior to the C-ANCA test, since I was born with heart valve defect the first rheumatologist attributed all my symptoms to that. The cardiologist then cleared me and said I was just deconditioned and needed to exercise more. I was then referred back to rheumatology who dismissed all my symptoms except for the schleritis. And only said, I had C-ANCA associated vasculitis. At that time I also had pain in feet and hands and poor exercise capacity. He put me on Methotrexate for 6 mos. I ended up in hospital with pneumonia though afterwards the rheumatologist indicated it might have been a flare and sent the insurance company the code of necrotizing respiratory granulomatosis. After this hospitalization he finally recommended Rituxan and said that he would have to call what I have Wegners for the medication to get covered. My first treatment helped but I still had flare as I had not been given the proper dose. The second treatment I felt much better. I was exercising and my energy and exercise cacity has improved greatly.

My frustration is knowing what new symptoms are related. In the midst of long work up I was also with hearin loss and now wear a hearing aid. The ENT was adamant that it was not related to Wegners. At one point the rheumatologist documented that my foot pain and tingling was anxiety!!! I don't look at the notes any longer. My most recent symptom is in my ear again. I saw nurse practitioner in my PCM office who admitted she knew nothing about Wegners but was certain that the ear symptoms were not related. I am a social worker and have with chronically I'll patients for many many years. BUT it doesn't help. Sometimes I feel like the providers think I am crazy!!!

Sorry for the long post. I guess I am just frustrated today.

Sent from my SAMSUNG-SM-N910A using Tapatalk