Newly diagnosed in California, high desert region

[BarbW]

First, thank you to everyone for all your posts. I have been lurking for a few months and felt all my issues were Wegener's. My problem was I was so isolated it wasn't recognized here in the Mojave. I just spent the last week at Mayo in Minnesota and finally got the diagnosis. I've had nose roaches for a long time (that's what I call 'em...had never heard the term "crusting" before). I started getting tongue and roof of mouth ulcers the last few months. I became moderately deaf in one ear last October 2013. I developed purpura on my legs and a nasty ulcer on my ankle in the fall. It became a struggle to walk during some episodes. I had no idea how I was going to make it to where I needed to go because it hurt so much. Muscle and joint pain shifted all over---it has been crazy. A few weeks ago I developed another nasty ulcer on my finger. My rheumatologist wasn't taking me seriously enough. My uncle, a physician back East, told me to get to Mayo, so I did. The good doctors at Mayo are still assessing everything are getting me set up at Cedars Sinai in LA. I am one of the p-anca positive people, so I guess I am in the minority. It looks as if I will have Rituxan and steroids in my future.

[Dirty Don]

Welcome BarbW, great place for you to find and participate. You are on the right track with Mayo...so neat that they're setting you up at CS...great hospital & staff. I'm near Phoenix so I go to Mayo here...have a great team watching my every move (WG of course...LOL) and keeping me on track. Have been there for nearly 3 years now. As you learn more about WG, please share and comment on what the many others on here are experiencing...this is the best learning track available outside of medically studying the disease...nothing like a good Weggie's story!! Best to you!

[Geoff]

Hi Barbw,
Sorry to have to welcome you to our global family but now your here, pull up a chair. First of all count your blessings that you are finally being taken seriously and are being looked after by good knowledgeable doctors. Like you I sat on the side of the Forum looking in at first, but now youve taken the plunge, fire away with questions or vent to your hearts content.

[mishb]

Hi Barb and welcome to the forum.

I'm sorry that you have to be here but thankyou to your Uncle for pointing you in the right direction to get a correct diagnosis.

Have the Mayo started you on any medications/treatment as yet?

We look forward to travelling this rollercoaster journey with you and hopefully it is a very short one to remission.

[Pete]

Welcome to the forum, Barb. We're all looking forward to reading about improvement in your condition. You're in good hands.

Good luck and better health!

[Jaypfei]

Hey Barb,

I too was a lurker for awhile, but lots of really nice folks here and helpful advice.

[annekat]

Welcome, Barb. I'm glad you went to the right place to get your dx and are being set up somewhere closer to home. With proper treatment you should be able to get this thing under control, although there is no cure and you might end up dealing with it off and on for the rest of your life. Reading on here, you will see the huge variety of experiences and degrees of severity among WG patients and will get a feeling for the different treatments and approaches to dealing with it. And you will find many or most of us continuing with our lives as planned, with a few adjustments. Above all, you will feel a lot less alone and there will always be people to talk to about what you are going through. I'm glad you found us, and best wishes to you in getting a handle on things.

[jlove]

Nose roaches haha. It's a gross image but it's also fitting. I used to call mine cone boogers before I knew crusting was a thing.

Welcome to the forum!

[Dirty Don]

ANNE, they're doing the booger thing again...gag...

[jlove]

haha sorry Don! I'm just getting used to a world where talking about my boogers is mildly acceptable

[mishb]

I called them Tiger Slugs :lol:

[Alysia]

welcome to the forum. it seems that you are in good hands and are going to get good treatment.
and now that you have us with you, you can feel safe that you are on the road for remission....