How long did it take you to be diagno... - Hughes Syndrome A...
How long did it take you to be diagnosed with APS/Hughes syndrome?
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Well over thirty years, and very difficult being one of the many with Sero negative Hughes Syndrome, also Systemic Lupus, which I now do test positive for having spent decades testing negative for that also! MaryF
it took me few months after a 5 week stay in hospital..............a specialist who knew of thrombotic disorders was on ball as well as my many other doctors with various specialities so I was quite lucky
Mine got diagnosed along with my lupus so less than 3 months as lupus only took 2 months
Took 31 years..... RainyNW
8 years after my stroke aged 31, although I had symptoms before that too.
diagnosed with vertigo on admission..then random scan showed stroke..
it took over 27 years of doctors and testing and many different diagnosis.. all of which were wrong...in 1995 i went to a new eye doctor and he asked if he could do a blood test on me...i said yes and the rest is history..i tested positive for antphosphid lipids ..back then almost no one knew about this illness ...thank goodness for him..he sent me to my specialist and he has and is taking great care of me..
A matter of days after appearing in casualty and being transferred to ICU.
My elder sister died of cerebral lupus so they were ahead on that diagnosis for me , however due to other features and my parents demanding action and a great response from the medical team I was trialled on some anticoagulant which I did not respond well to, i guess by this stage it was a matter of weeks after ICU.
By month 3 ( still in hospital) I was on warfarin and it had been explained to me i had"sticky blood" and it was called antiphosphilipid.............. this all took place in 1987; by 1990 i was sent to Prof Hughes.
Probably over a lifetime--15 years ago, DVT in leg, treated with heparin and Coumadin for 4 months, circulation problems since, then one year ago, DVT in 3 deep veins at one time in same leg--treated with lovenox shots and warfarin for 4 months--then sent to a hematologist for testing. Hematologist was 'right on the money' with my blood tests and diagnosis so from the time I went to him, 2 weeks. He knew what he was looking for right away, and so, knew what tests I needed. But now that I know what it can cause, I can put together events throughout my life that were probably caused by APS and could not be diagnosed--miscarriage, mitral valve problem, anemia, vision problem, etc.
Having problems since 1980s. Had to discover it first.
