Sticky Blood-Hughes Syndrome Support
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No symptom relief

Hi! I've had numb ears, back of head, tingling in fingers, toes, leg and arm weakness, foggy thinking with little relief. Diagnosed in Feb 2012 with primary aps. Currently on 2.5 mg arixtra, low does aspirin and plaque nil. Yet, no relief. Doctors have no more tests to perform.

I'm searching for best U.S. Medical center to get help. Looks like Duke is highly rated for APS from cooments on this site. Anybody familiar with John Hopkins in regards to APS?

Would appreciate any comments on where to get help. I live in U.S. Northeast. Thanks.

6 Replies

Too bad you don't live on the west coast, I had a lot of luck with a the head of hematology at USC. I had similar symptoms but they got better with the right meds. Your APS may just be progressing and you need something stronger. Good luck and keep us posted xoxo Nicole


Hi there, and welcome, yes Duke does seem to be one where people in the USA go, you will have a few USA replies on here to confirm that one, and perhaps the other, in the next few days, or probably hours. I am sure you can have some sort of fine tuning with the right practitioner. Best wishes. Mary F x


Why are you on arixtra rather than heparin or warfarin? I don't think arixtra has been really studied in APS and it may not be as effective. You may need a higher dose to control your symptoms as many do with warfarin.


Nicole and Mary, thanks for comments - good to know there is hope. I've been sick for 8 months and was beginning to think there would be nothing to help.

Salty, on arixtra because lost of symptoms but no evidence of stokes. Also less chance of bleeding. Hematologist upped to 5mg today.

Calling Duke today. Thanks everyone.


I can vouch for Duke as knowledgable folks. And if you do head there, know that the Duke Condiminiums offer 2room hotel rooms with full, functional kitchens, free shuttle service to the clinic , and cheap pick up and drop off at the Durham Airport, free parking, all at a reduced rate if you are a Duke Medical patient. ( I paid $110.0 for 1night.)

Good luck. Our thoughts are with you.



Thanks for the info, Gina. Feeling more confident about Duke.


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