I'm a new member and wanted to introduce myself.

[Shannon]

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.

[Thakator]

Hi Shannon - - Welcome to this forum; you'll find it an invaluable tool in furthering your Wegs education and a wonderful source of true understanding of the path upon which you find yourself. Please take the time to read many of the older posts.
Yours is a familiar story and one which we all wished you had no reason to relay; but have it you do and thus you are a Weggie sister to us all. Welcome, Ron

[HypnoticEyez]

Hi Shannon - I was newly diagnosed with WG and like you am new to this forum. I have yet to introduce myself nor shared my story with anyone. I just wanted to say hi and welcome to the forum. I am a bit shy and it is nice to have my first post under my belt.

[elephant]

Hi Shannon, Welcome! THere are people on this forum including myself that have lived longer than 17 years with WG. I have lived with wegeners disease for 34 years! I felt like a hypochondriac for years....and my family even though so! You are not alone!

[mama2005]

Hi. Glad to see you here this site is a great help for newly diagnosed and even for others that have achieved remission. I am glad to of found it and love to know that it wasn't just in my head as one doctor pre diagnosis told me.

[vdub]

I'm glad you registered. This is a place where we get pretty candid about what's going on, what you can expect next, and how you feel. I don't know how many times I have heard "you look great, how can you be sick" or "you'll be fine, there won't be any problem". We've all been there, but you've been "there" for 6 years. We'll probably be asking a lot of questions.

[Shannon]

Thank you all for the warm welcome! I have already read some of the great info and stories up here and have had thought...'oh my gosh, that happened to me too!' It is so nice not feeling alone!!! And to Elephant, 34 years is awesome! Thank you so much for sharing that. My kids are 16 and 18 and they get so scared, being able to share this with them will ease their minds greatly!

[Sangye]

Hi again Shannon, I welcomed you on another thread, but welcome again! Glad you found this wonderful group!

[Psyborg]

Welcome to the forum Shannon.

[Chris G]

Welcome Shannon! I'm also treated at U of M!!!! I was diagnosed there in November of 2010, after 3 years of being treated like a hypochodriac, by every so-called specialist I'd seen previously. Who do you see there? I see Dr. Jan (Fellow) and Dr. Fox (Attending). And love them both.