Quote:
Originally Posted by en bloc
I don't know much of your history, but have they checked you for Sjogren's? Do you have dry mouth or eyes? Sjogren's can present with joint pain, raynauds, fatigue, etc. Even hypercoagulation can be associated with Sjogren's. Have they run blood tests...ANA & others?
Speaking of hypercoagulation, why do they say IVIG would kill you? I have antiphospholipid syndrome (so very much hypercoagulated) and received IVIG for years. What are saying is the root of the hypercoagulation? IVIG can be helpful with autoimmune neuropathies.
Hopefully you'll get more answers and find a suitable treatment. If your problems are autoimmune based, then there are a few new treatments out there (Rituxan, for one).
Sending some positive energy your way.
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Hello,
I have been tested for everything, had many tests repeated today including another ana panel and all those anti ro, hu, ri antibodies. I do have dry mouth and eyes, seriouly dry eyes treated for years.. if you could refresh me on the test for ss I'll look at my test results.
My problem with IVIG: IVIG has proteins that increase coagulation. I had every deep vein in my left leg from ankle to thigh clot up last nov. Left me on bedrest which of course did nothing to help my strength tests. But if they gave me anything that would increase coag, I could stroke out or have a heart attack or get venous gangrene in my left leg. Maybe if they get to the cause, they can fix the clotting and I can get a trial of IVIG.
I will ask about SS when I hit the clinic. I read about it, but was not sure if it attacked motor axons.
Thank for the suggestion, it is worth looking into.
