Quote:
Originally Posted by JB63
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.  |
The test for Sjogren's is SSA & SSB. Keep in mind, about 40% of people with Sjogren's are sero-negative. The best diagnostic tool for Sjogren's is lip biopsy.
Are they treating the hypercoagulation with blood thinners? The clotting factor with IVIG isn't very high risk...but there is a small risk, so I understand the caution since they don't know what is causing your clots. There are ways to properly use a treatment like IVIG with these types of conditions. I have had 3 strokes and many TIA's and was still able to get IVIG. But of course I'm (and was at the time) on lifelong blood thinners, which makes a difference. I hope they find something for you. Like you said, maybe once they identify the clotting issue, they can address it and try IVIG.
Are you talking about a sural nerve biopsy or skin biopsy?
You have a good positive attitude!!!