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Hughes syndrome

Posted: Thu Oct 27, 2011 8:17 pm
by CandyApple
I was dx with antiphospholipid syndrome or hughes syndrome today. I have been having body pain and my doctor ran tests, saw high d-dimer, had scans and ruled out clots. he ran more tests and dx me with Hughes syndrome. I have to see a hematologist. Geez I feel cursed to have two auto immune diseases now.

Is this common with MS to have sticky blood?

Re: Hughes syndrome

Posted: Fri Oct 28, 2011 6:39 am
by CandyApple
I had MS for over 25 years and 3 relapses. I don't have any MS symptoms, I never have, so it will be difficult for me to know if they go away or not. What happened was I moved from a high climate where my MS started, then sea level for many years and I felt great and now back up to a higher climate. I started hurting all over , so bad you can't even touch me. My muscles are very sensitive to touch. I am also feeling dizzy and a bit headachy. I see a hemotologist and I suppose he will put me on asprin or something else. My Doctor feels confident I will feel better soon, but he didn't mention anything about MS, so I don't think it's related.

Regarding your d-dimers always being high, that is common post surgery and if you had a clot. My doctor explained that to me. It's also common after child birth etc.... My d-dimers have been high for years, this is why he finally decided to see what was going on. If you had a clot in the past I know they keep people on blood thinners for awhile. d-dimer doesn't mean you have a clotting issue, it means you have or had a clot. My test was a PTT-LA which was high, which is how I got dx with hughes syndrome.