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Old 11-19-2010, 08:40 AM #3
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cyclelops cyclelops is offline
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cyclelops cyclelops is offline
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Join Date: May 2007
Posts: 2,049
15 yr Member
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I have an AI thing going on. Right now they call it Sjogren's, but who knows. I deal with a lot of vasoreactive type stuff. I have had a minor labial salivary gland biopsy with a lot of lymphocytic infiltrate in it. My muscle biopsy was neurogenic myopathy, not inflammatory. I would wonder if you could have polymyositis or something similar? I can barely use my upper body. I feel like my head will fall off and I can't raise my arms above my head without getting an awful headache 36 hours later. It isn't disuse, since I force myself to do stuff, like painting or cleaning, but, it really causes me issues. I always have some 'itis' going on....bursitis, tendonitis etc. I was on pain meds, went off for 6 months and ended up back on a low level opiate, which is OK....it doesn't plug me up too bad. My ANA has been high for a few years now. (They can't get an accurate lab when on IVIG). I am on IVIG.

I am wondering if they could try treating you with IVIG to see if it is effective for you?

These inflammatory, autoimmune things are sometimes very hard to pin down specifically, yet are very difficult to deal with.

I guess if they are offering you more diagnostics, I would tend to say, go ahead and have them.

Hoping you stay feeling 'ok'.
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