New from NC, USA

[Sangye]

Rachel, I agree with Jack and JanW-- you need to be focusing on how serious these diseases are instead of trying to make your treatment convenient. I wish I could say that more diplomatically! We all go through it in the beginning.

When your only experience with a doc is a non-vasculitis specialist, your doc may look okay. Believe me, if s/he isn't on the phone with vasculitis specialists asking for guidance in your care, you are at risk.

RP has a worse prognosis than Wegs, which is bad enough if undertreated or improperly treated. You need to hit the ground running.

[nebs]

I agree with all and RP can cause the saddle nose deformity as well -- are they saying that you have some kind of unnamed small cell vasculitis? There are definitely WG specialists at UNC Chapel Hill -- both a young female rheumy who spoke at the Vasculitis Foundation Symposium as well as a nephrologist -- I believe he is of German extraction, so I would be surprised if you could not get some answers there.

Do you remember the young rheumatologist's name? We are looking for a specialist in the carolinas.

[JanW]

I'm sorry I don't -- but there are a couple of doctors from NC and specifically UNC on the Vasculitis Foundation's website as specialists. Go here: Front Page | Vasculitis Foundation

[elephant]

Hi Nebs, there is no specialist in South Carolina, that is why I drive to Cleveland Clinic. I see a wonderful local doctor in greenville, SC and she highly respects Dr Carol Langford and calls her if I get into trouble!

[Jaha]

Rachel,

Welcome to the forum, and I think you might consider getting a consult with Cleveland Clinic. I am so gratefull to have found the right dx after suffering for so long with WG and being in the 20% of people with the disease that labs didn't show abnormal and still don't. They have a amazing board of doctors that review all the symptoms and come up with the treatment. I was diagnosised by catscans and bioposies. Look forward to hearing more from you.
Jana

[renidrag]

Welcome to the forum Rachael. Please follow the advice of the others on this site. I finally did and am now one of the lucky wegs that is in remission without meds. It can happen. I don't know anything about the other diagnosis but believe me, the people here know what they are talking about.
Dale

[nebs]

Thanks for your input. It sounds like very good advice and I thing he is on the right path.
Nebs

Rachel,

Welcome to the forum, and I think you might consider getting a consult with Cleveland Clinic. I am so gratefull to have found the right dx after suffering for so long with WG and being in the 20% of people with the disease that labs didn't show abnormal and still don't. They have a amazing board of doctors that review all the symptoms and come up with the treatment. I was diagnosised by catscans and bioposies. Look forward to hearing more from you.
Jana

[Sangye]

Dale, I'm so happy to hear you're holding steady in remission.

[elephant]

Good to hear your in remission Dale!