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Immune Disorders Message Board


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Re: My update
Aug 30, 2004
Hi, Kellykay,

It was great hearing from you, but I'm sorry to hear that you are still having so many problems. I do hope and pray that you really don't have Wegener's; did you just have one c-ANCA test that was positive, and one that was negative? Maybe you should have one more done, as a "tiebreaker", if you are still concerned about it.

I did a little reading online about the test. False positives are fairly common. I assume your kidney function tests have been normal. There does seem to be a fairly wide consensus among specialists considering a dx of Wegener's that a biopsy of affected tissues is necessary to make the final dx, rather than just relying on a positive c-ANCA -- even in patients in an "active" phase of the disease.

Am I correct that you are waiting for the results of a repeat ANA and an anti-ds ANA? I hope you don't have to wait too long for some answers.

I know how frustrating this process is. Sometimes I feel that I am more distressed about not having an "official" diagnosis for many of my symptoms than with being so sick!

Best,
Pat





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