positive test for possible autoimmune vasculitides ?

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Mr_C - 25 Sep 2004 19:00 GMT

Looking for input:

After the latest battery of tests, I had a positive test for atypical
p-ANCA (1:80??). My GP said "could be significant, could be nothing" and
ordered a follow up ELISA test. She did a kidney test which was clear.

My ENT said "if you have Wegener's granulomatosis or some other autoimmune
problem, at least it is very early and not generalized. You need to see a
rheumatologist" He agreed with doing the ELISA test, but though the result
was significant even if the ELISA test shows nothing. He reitterated the
need to review wiht a rheumatologist as my result ("atypical") requires
further invertigation.

I looked up these problems on the web and it is pretty ugly ... Does
anyone have any experience with this or thoughts to share?

Thanks !

Andrew

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Don Brady - 26 Sep 2004 05:06 GMT

>Looking for input:
>
[quoted text clipped - 11 lines]
>I looked up these problems on the web and it is pretty ugly ... Does
>anyone have any experience with this or thoughts to share?

Just that I would never pay too much attention to a single test result, or to
any test result evaluation by a GP or specialist in another area.

I would get several opinions including some from experienced internists or
immune specialists I think. Often one thing can masquerade as another.....

Maybe someone else has specific experience with the area you mention and will
follow up......

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iamthezookeeper - 26 Sep 2004 14:29 GMT

I am going through the same tests right now and have an appointment with
the Rheumatologist October 12 to see if I have Churg-Strauss or Wegener's
or any other form of vasculitis. Do you have the hives and did they biopsy
one of them? They need to biopsy the lung or kidney tissue also if they
are involved. The treatment I am on so far is quite formidable to me as I
hate meds. It includes Prednisone, Ultram, Atarax, Singulair, Allegra,
Albuterol, NasaCrom, Gentamycin Nasal Wash, and Advair. The hives are down
and the pain is lessened but I want my immune system to work, not to mask
the symptoms. Good luck and keep us informed. Yes, Vasculitis is pretty
scary but can be treated and if caught early can be put into remission.

Trudy...What if the Hokey Pokey really is what it's all about?

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