where is a specialist in NC?

[Mitch]

I was sent to a hospital in NC; it was there I was diagnosed with WG. Is there anyone out there who knows a Weg specialist in this area. I'm located in mid-south NC. My wife has back probs, so we're trying to find someone in this area. Not sure there is one. Thanks for any help. Mitch

[Psyborg]

Here's the list from the Vascultis Foundation website. It looks like there is a small group at UNC Chapel Hill

Vasculitis Foundation Medical Consultants | Vasculitis Foundation

[Mitch]

Thank you, Bob. I'll be looking into this.
Mitch

[LilyPony]

Mitch, I'm in the Raleigh area.

My experience with the UNC clinic was that every appointment I made was followed up by a postcard to reschedule for an equally inconvenient time, weeks to months later. It was really difficult being a teacher, planning for time off, then rescheduling constantly. After not being seen for about 6 months, I got a letter that the doctor had retired (though is still on their staff list 10 years later). They were not able to transfer me to another doctor without going through the 9-12 month waiting process for new patients.

I am currently at Duke, which I thought was going to be a good thing since that was recommended by the vasculitis foundation. I waited 8-9 months for my first appointment, where I was told I don't have wegs, go home and lets see what happens. My vasculitis is a little outside of every "box" so there is some vagueness of diagnosis but concrete in that it is a vascuilitis with orbital and sinus involvement. I had to wait I think around 5 months for my "30 day follow up" (with new rheum at same clinic) while symptoms were exponentially getting worse. Now I've got prednisone and have been waiting a month for a referral to JH clinic in MD, come to find out today that nothing on Duke's side was processed AT ALL. Last straw was I left message with nurse on Weds that my nose bleeds were getting worse and sinus pain was coming back. I got a call back from the nurse that I needed to see my general doctor or find an ENT regarding nose bleeds. I don't know, maybe I'm high maintenance, but this seems out of line to me.

My advice, the advice that everyone here will keep screaming is to get your specialist at a vasculitis center who can work with a local rheum.

[Mitch]

Lily,

I really appreciate your response. I thought I might be on the right track here with Duke; however, after hearing about your difficulties in dealings there, I'm not so sure. I may have to regroup and eventually check on Johns Hopkins. JH was our initial plan...or desire, but we were thinking about logistics. Our neurologist at Moore Regional does know Dr. Nancy Allen there (Duke) and thinks we, at this point, are going in the right direction. He says he will stay in contact with her to be sure she recieves and reviews my records. He did mention that if this doesn't work, then JH should be the next step.

After reading your thread, I'm going to ask him about the rheumatologist idea. (local rheum working with a vasulitis center)

Thank you, and NO you're not high maintenance. This is your health/life people are messing around with...the delays, etc. No excuse for that. You have to be proactive, as you are doing.

Thanks again. You've shed a different light on my situation.
Mitch

[Sangye]

Lily, you're not high maintenance. Those waiting times are unbelievable. You certainly won't get treated like that at JHU.