Hello a another newbie

[Donna88]

I am new to this blog thing, but went looking for information and support after my Doctor gave me the lovely news it could be WG. They have been throwing around the WG diagnoses for the last 20 years, now in doing research yes I'm convinced this is what I have. I have been dealing with symptoms all my life and not putting it together with WG... For the last couple of years I've been dealing with my left bronc closing off air to my lung along with a couple other systems of WG... My great husband has kept me from going down the pity road with the attitude it could be worse.
Donna

[maria garcia]

Have they checked your Anca's for a positive result and MPO and PR3? Anca would usually not always be a marker for vasculitis and WG is one of the disease under.

[Sangye]

Hi Donna, welcome to the group! Wow, 20 years? What symptoms have you had all this time?

[Donna88]

Yes tested my ANCA always comes back neg... dealing with joint pain, sinus issues, lung issues, had noise bleeds as a kid, get puffy gums which then turn into open sores, blood shot eyes always lately... My doc says sometimes it takes a long time before this thing declares itself. good times..

[Al]

Yes tested my ANCA always comes back neg... dealing with joint pain, sinus issues, lung issues, had noise bleeds as a kid, get puffy gums which then turn into open sores, blood shot eyes always lately... My doc says sometimes it takes a long time before this thing declares itself. good times..

Welcome to our group, Donna! And don't worry about the pity thing--we get pretty good about understand that kind of feeling around here, since it really is a nasty disease. Oh, and it really doesn't matter if the medicos declare your situation WG or not: When you hurt, you hurt. You may or may not be officially diagnosed with a specific ailment, but your symptoms overlap heavily with those of many of us. I believe you will find the forum a good home for you!

Al

[Dirty Don]

Welcome Donna...lots of people with good info for you on here...be aware of all possibilities, along with your husband be your own best advocate, and be persistent as all get out!!

[elephant]

Glad you are here, you will get alot of information from us. We all have been through this and we are here to help.

[mishb]

Hi Donna and Welcome.

I'm glad you found this site but I'm not glad about your possible diagnosis :thumbdn:

Take care and ............

[Dryhill]

Hi Donna welcome to the forum. Why the pity after all having WG gives you a good reason to join our very exclusive club and who wants to be well and in good health, this disease gives us a far more exciting time? Ok so I really am weird and a masochist. :biggrin1:

Jim

[Donna88]

Ha ha this is what I have found.. you have to laugh at this or you'll go out of your mind. I look forward to reading and taking part in this, thanks for the big welcome.
Donna

[annekat]

Yes tested my ANCA always comes back neg... dealing with joint pain, sinus issues, lung issues, had noise bleeds as a kid, get puffy gums which then turn into open sores, blood shot eyes always lately... My doc says sometimes it takes a long time before this thing declares itself. good times.. Sounds a lot like what led up to my eventual diagnosis, though the time frame was only a couple of years. When it went into my lungs was when I got a diagnosis, though that was accomplished by a nasal septum biopsy. My ANCA was barely positive.

In any case, welcome to the group! I have found this to be an enjoyable part of my daily life and informative beyond anything else I have found.

Anne

[BookNut]

Hi Donna. I too am a newbie. You seem to be in a similar situation to me. I am someone who wants definite answers. Not getting a diagnosis for 18 months makes me crazy. 20 YEARS? I can't imagine! I plan to go through my current specialists asking for a biopsy to try to pin this down. Once I find two doctors who will agree on the diagnosis, then I plan to go back to my immunologist, get started on the imuran and insist on a referral to The Cleveland Clinic.

Good luck to you. I would be most interested in finding out how things go and if you get a definite diagnosis soon.

[marylz]

Hi Donna. I am new as well and have gotten lots of great information from this forum. Good luck with your diagnosis!

[annekat]

Donna, we haven't heard from you for awhile, how are things going?

[Marci]

I'm new here too. I find this site to be such a comfort. Please let us know how you are doing.