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Old 02-12-2009, 10:53 AM
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cyclelops cyclelops is offline
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Join Date: May 2007
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15 yr Member
cyclelops cyclelops is offline
Magnate
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Join Date: May 2007
Posts: 2,049
15 yr Member
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I am not that familiar with cryoglobulinemia, however, I did research it at one point. I am not sure if I was ever tested for it. Somehow I doubt it. These days I forget things, so the specifics of the disease escape me right now.

I think Glenn will agree with me, when I say that most of these autoimmune diseases are related in one aspect or another.

I am on IVIG right now, and at this point, probably will not consider other drugs. I tried Plaquenil and it did nothing but contribute to my misery.

I think with stem cell research being able to develop here in the States, that much progress will be made.

Doctors hear hooves and think horses. They look at the most common diseases. SLE, Sjogren's, RA are more common, then the less common scleroderma, mixed connective tissue disease which by the way have serological markers just the same as the more common ones. By the time they think zebras, quite a while has gone by. (At least in my case). So it is good you have a doc thinking zebras.

Here where I live, treating rheumatological disease requires a blood marker, right or wrong, they want these blood markers.

It sounds like your doctor is thinking!! I agree, either you were cursed with 10 conditions or they all relate. I have had a terrible time getting that across to docs. I don't think it is likely that you have 10 conditions but rather one. Have them check your t cell panel, lol.

I hope they can find and answer for you, and I hope that you find the treatment palatable. Most treatments pose substantial risk. It is scary. Hand on to your hat.

The other thing is that sometimes it takes time for symptoms to show. I hope you get the proper diagnosis, and a medication you can tolerate.
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Megan (02-12-2009)