Antiphospholipid Antibody Syndrome

Posted by taogirl2 @taogirl2, Sep 5, 2012

Searching for anyone suffering with this debilitating illness. I have been diagnosed since 2003 and suffered many strokes and TIA’s. Looking for some alternative medicine other than aspirin and cumadin to combat future problems. Researching Nattokinase at the moment but wish to know if anyone has heard of this herbal remedy and if it is a possible alternative to the regeme I am currently on.

Interested in more discussions like this? Go to the Stroke & Cerebrovascular Diseases group.

My daughter had a cerebral venous sinus thrombosis in May. (Blood clot in back of her head.) We thought she had a migraine that two trips to walk-ins and two to the ER weren’t helping. They found the clot and admitted her to the hospital for twelve days while getting the pain under control, and getting her transitioned from Heparin to Warfarin. They drew blood a twelve days ago and sent it off to Mayo for testing. Her doctor believes she has APS.
What are you currently taking for this, warfarin? How old are you? My daughter’s only 19 years old and since she’s gotten out of the hospital in Fargo, hasn’t had another symptom, but we are constantly wondering and waiting for something to happen.

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I have lived with APS since 1994. I am sorry you find it debilitating, mine isn’t as bad. I have had several DVTs, but nothing above the hips. I have recently been diagnosed with heparin induced thrombosis, and switched from Coumadin after 17 years to lovenox, then Arixtra, now a newer drug, Xarelto. I’m 45, so I just keep hoping for good health.

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@colettehellerud

My daughter had a cerebral venous sinus thrombosis in May. (Blood clot in back of her head.) We thought she had a migraine that two trips to walk-ins and two to the ER weren’t helping. They found the clot and admitted her to the hospital for twelve days while getting the pain under control, and getting her transitioned from Heparin to Warfarin. They drew blood a twelve days ago and sent it off to Mayo for testing. Her doctor believes she has APS.
What are you currently taking for this, warfarin? How old are you? My daughter’s only 19 years old and since she’s gotten out of the hospital in Fargo, hasn’t had another symptom, but we are constantly wondering and waiting for something to happen.

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Hello, I am unsure if you still use this form but if so I do as well have APS and am 20 years old. I do as well reside in Fargo. I was wonder how your daughter is doing? Has she has any other issues since then? How did they discover the clot, did they just do a d-dimer? I am in constant worry of experiencing a clot and would really love to connect with you or your daughter on this issue.

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