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Re: Churg Strauss Syndrome
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Posted by Sally
on November 04, 2000 at 15:57:11:
In Reply to: Churg Strauss Syndrome posted by Molly on November 21, 1999 at 20:49:09:
: I just recently learned that I may have this illness (testing will begin next week). It has been a very frustrating journey to get to this point, however. I would like to know if there is anyone out there with this illness who would be able to share their story. Any information would be sincerely appreciated.
Molly, I was diagnosed with Churg-strauss 2 years ago. I had skin lesions, severe respiratory involvement, and nerve damage in my arms, hands, legs, and feet. It was a very scary and frustrating time as doctors tried to figure out what I had. And I ignored the symptoms for a long time because they just seemed like a respiratory infection or fatigue or a bad reaction to stress. Now I'm in remission as long as I stay on my meds -- methatrexate and prednisone. I have occasional relapses, usually when I contract a cold or sinus infection which seems to initiate a round of inflammation. I still have lingering neuropathies in my extremities, but I have regained strength and function in all areas.
I now exercise religiously, take lots of anti-oxidant supplements, manage my stress levels, and resist the urge to tinker too much with my meds. Find a good rheumatologist and refuse to take this disease lying down! I think I'm better now than I ever was before my diagnosis -- it was a real wake-up call.
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