Sorry to her about your plight. I think generally people are getting diagnosed quicker now than a few years ago. I got diagnosed in 2010 after seeing about a dozen doctors over a two or three year period or more and also had to knock on deaths door before finally getting a diagnosis and correct treatment. Of course I had lot of permanent damage but feel very lucky just to have survived and to improve enough to attain a drug induced remission.
It is difficult to know for certain when Wegs actually begins since it mimics so many other health problems. And it often seems to simmer or smolder for a long time with milder symptoms but then it can start moving quickly to a serious attack that is life threatening. Like, were those sinus infections years ago Wegs or not?
Any good conscientious doctor can consult with a GPA expert although most doctors still seem to call it by the old name of Wegener's. Such free consultation services is listed on the Vasculitis Foundation Website. Have you looked at it? I would encourage you to find a doctor willing to ask for such consultation on your case. Today with electronic communication telemedicine is very good even in the most remote areas. My treating care team consulted with three of the experts listed on that site which I believe contributed greatly to my fortunate survival from Wegs.
Last edited by drz; 03-29-2016 at 10:32 PM.
Knowledge is power! Wisdom is using it to make good decisions!
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