Trying to get an appointment...

[LilyPony]

After speaking with the Vasculitis Foundation today, I was able to get a recommendation for a wegs specialist at UNC hospitals (Dr. Mary Dooley). I attempted to make an appointment and was told that my primary had to fax my records there (not a problem) and they would be reviewed to determine my eligibility for an appointment. Then, after that, the soonest they are willing to schedule a new patient is possibly late May but likely not until June and that was if my primary pleaded the urgency of my case.

The wegs specialist at Duke Univ doesn't see patients, only does consults.

Does anyone by any chance know of an independently practicing rheum in the Raleigh NC area who may be taking patients in a better time frame? I am paranoid about the flaring condition I'm in, but its far from an emergency. I haven't been seen by a rheum in 5-6 years and I only saw the one once.

[JanW]

Hi, LilyPony - A very quick Google search turns up a Dr. Fathima Kabir, who lists among her clinical areas of interest, vasculitis. She may not have WG cases in her load right now (or she may), but she is still going to be more familiar than the average rheumo with this very specific, very rare category of AI diseases. She is at Duke Raleigh, name of practice is Wake Rheumotology. Their may be others if you really drill down in google. I would start there and make very clear that I was calling because of suspicion of Wegeners. When I did this with the ENT, I was in the next day. If she isn't accepting patients, ask whether she can make a recommendation of someone else. I really think that if you can plead your case, you can get someone to see you and get to the bottom of this.

[JanW]

Another suggestion would be utilizing your insurance company's membership services line (or nurses line) to explain your situation and try to locate a close-to-you doctor. The insurance company certainly doesn't want you to eat up their money getting the run-around either!

[Sangye]

LilyPony, if it were me, I'd make tracks to JHU in Baltimore or Cleveland Clinic (don't know which is closer to you). Please don't lose time by trying to get in with someone who may or may not be a Wegs specialist. You can always use someone closer to you as your "local" doc, but you really should get the experts involved from the start.

[JanW]

I agree with Sangye, LilyPony. For some reason, I misremembered and thought you were still trying to get diagnosed. Since you know that WG is what you've got, you need to get to a specialist.

[LilyPony]

I'm really trying to stay as close to home as possible. As much as I wish we could go straight to the best who'd get me in quickly, there's just not the financial resources to arrange for flights and child care while I'm away. Family could help fund the travel occasionally though not consistently. JanW, thank you for your suggestion of Dr Kabir. The name sounds very familiar to me and I'm wondering if that was the rheum who didn't show up for the appointment. My eventual goal is to get into either the UNC or Duke hospital programs. They both seem to have strong vasculitis specialties, and a few of them at both university hospitals who specialize further in wegs. I plan to check in with Dr. kabir tomorrow and see how far out those appointments are and go from there.