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Where are you from LilyPony?
Where are you from LilyPony?
LilyPony, don't call yourself stupid because you didn't know. Your doctor should have that title!
It would help to know where you are. We can help you find a Wegs doc if we have some idea. 2-3 months is a long time to wait. You can usually get in within 6 weeks to the major centers.
I am near Raleigh NC. My ENT found someone at Duke University in Durham NC that does consultations. There was somebody else in the area who didn't accept my insurance. I plan to contact the vasc foundatn Monday and hope to get someone with experience.Originally Posted by Sangye
I think the single most frustrating thing was my original rhem was a wegs researcher. He said he was one of the best int he country and I was lucky I lived so close. Sure wish I remember his name but he was affiliated with UNC but retired before I got a follow up. He kind of laughed off the diagnosis saying that it would never be an issue because I was far too young (late 20's at diagnosis) and a woman. Clearly all ages and women can get it as I've seen on here. He said that I seem to have invented my own kind of vasculitis but wegs was the closest fit. But now I've been getting winded easily for a few years despite attempts to be fit. I chalked that up to two back-to-back pregnancies and just figured never got quite strong again. The the ongoing coughing and sinus problems, the tendency for my eye wegs to flare up every time I get a cold... all coming together now!
Last edited by LilyPony; 02-22-2010 at 03:39 AM. Reason: spelling
My pulmo always said that more men get the disease than women and I never understood where she got that from because even a casual glance at internet sources shows that's not the case. I always thought, however, that it was much more likely to be present in people my age (40s and above) but unfortunately, having come to this site and the Facebook site, I can see that there are many, many young people and teens affilcted with it also.
Definitely watch the wheezing and the windedness, Lily...that's exactly what my stenosis is like and I've got sinus involvement also. (if you want to hear what stenosis sounds like, vs. asthma, I know there are sources on the internet).
LilyPony, I just can't believe that anyone who calls himself a Wegs specialist would say that having Wegs would never be an issue, no matter what age or gender. Wegs is definitely not limited to middle aged people. We have a lot of members on here in their twenties and even some teens. I know of several children under age 10, as well.
I can see them saying you had an unusual presentation, but that doesn't make it less dangerous.
Jan, I think the pulmo's data is out of date. Men are only slightly more likely to get Wegs. It's almost 50-50.
That's what I meant Sangye -- I'm not sure that it was ever less than 50-50. That's why I never understood where she was getting that from. Turned out that she had never seen WG at all.
Gotta love the docs who've only seen Wegs in a textbook.... I think years ago it was predominantly men who got Wegs, and that the average onset was in seniors. When I see my Wegs doc next time, I'm going to ask him if all these cases of Wegs in teens and twenty-somethings are a new trend. Sure seems like it.
I agree Sangye. I was diagnosed in my very early 30s and was considered to be young for such a diagnosis.
Back 30 years ago I had Wegeners disease and the Rhuematologist ( Children's Memorial Hospital ) in Chicago....didn't diagnosis it. I had kidney damage...and what they thought was pnuemonia... and arthritis which started two years before the kidney damage....I was lucky that they gave me prednisone and another drug ( I think it was cytoxan) they mentioned my hair falling out. So kids get it...it just gets diagnosed wrong.
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