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Re: Churg Strauss Syndrome

Re: Churg Strauss Syndrome

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Posted by Jean on December 15, 2000 at 10:33:55:

In Reply to: Re: Churg Strauss Syndrome posted by Sally on November 04, 2000 at 15:57:11:

: : 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
: 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.

I agree... it certainly was a wakeup call for me too. Mine started in Oct 1996 with a severe respiratory infection and then in Jan 1997 I had incredible stress and WHAM I had neuropathy in all extremities. It took another 8 months - and about 12 doctors - muscle and nerve biopsies to come to a diagnosis. I have finally gotten my meds down and have some residual neuropathy in the legs and feet. However I do exercise and eat a healthy diet and watch for the slightest indication of a flare up.
Hope you have a wonderful holiday season.
It can improve so hang in there.

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