Shannon
10-19-2011, 10:35 AM
Hello! My name is Shannon and I was diagnosed with WG in January 2005. For years I was going to doctors with sinus infections and inflamation in all of my fingers and hardly being able to walk. One doctor actually said to me once...are you here because your finger hurts again! These general practiioners made me feel like the worst kind of hypochondriac. I even went to an ENT who didn't figure it out even with a full-blown saddlenose deformity.
It took three episodes of my mouth and throat filling up with blood before I insisted on a CT scan. They discovered a lot of nodules and I was finally referred to the University of Michigan where I learned what WG is and was put on Methotrexate, Folic Acid, Prednisone, and Bactim. It took another six months to get the ANCA test to come up positive but it did eventually.
I made the mistake of reading old information on websites and thought my number was up. It was a bad time for me. I had a diagnosis but it was a bad one. I have now learned to only go to sites that end in .edu or .org and it seems that great strides have been made with WG. My eye specialist even told me that people are expected to lead long healthy lives now as long as they can recognize flare-ups and it doesn't get into their kidneys. My former doctor told me his longest WG patient has had it 17 years, which I didn't appreciate hearing because it felt like a timeline to me.
I can't wait to meet other WG patients, because in six years I have not met one other person with this disease and it is difficult for people I know to understand all of the things we have to deal with with. Ironically, it was while I was waiting to see my specialist this morning that I found this site and registered.
It took three episodes of my mouth and throat filling up with blood before I insisted on a CT scan. They discovered a lot of nodules and I was finally referred to the University of Michigan where I learned what WG is and was put on Methotrexate, Folic Acid, Prednisone, and Bactim. It took another six months to get the ANCA test to come up positive but it did eventually.
I made the mistake of reading old information on websites and thought my number was up. It was a bad time for me. I had a diagnosis but it was a bad one. I have now learned to only go to sites that end in .edu or .org and it seems that great strides have been made with WG. My eye specialist even told me that people are expected to lead long healthy lives now as long as they can recognize flare-ups and it doesn't get into their kidneys. My former doctor told me his longest WG patient has had it 17 years, which I didn't appreciate hearing because it felt like a timeline to me.
I can't wait to meet other WG patients, because in six years I have not met one other person with this disease and it is difficult for people I know to understand all of the things we have to deal with with. Ironically, it was while I was waiting to see my specialist this morning that I found this site and registered.