Do I have Hughes syndrome/ APS?

[SusieMac]

So I have written to my consultant asking him to consider whether I have Hughes syndrome, as I appear to fit the bill in terms of the symptoms / test results and am on long-term treatment for high blood pressure and multiple PEs which have left me with severe chest pain. My consultant concluded lupus anticoagulant blood disorder and put me on warfarin lifelong as a preventative measure, this has been the case for over a year so why do I still have a pain in my chest? I had pre eclampsia in October 2010 which seemed to cause everything else to go downhill and I still have a swollen right leg after all this time, so I'm not convinced yet that I am no longer a walking timebomb. I am hoping my consultant diagnoses Hughes syndrome partly as having a named condition will help my psychologically. Does this make me sound mad?!

[MaryF Administrator]

Hi there and welcome, not at all mad, this is a good option to consider you do seem to possibly fit the bill, where are you located? Mary F x

[SusieMac]

Hi Mary, I live in Lanarkshire, Scotland. Thanks for your reply. I have posted my letter, so just have to wait for a response now!

[jessielou]

Hi hon

Welcome and glad you found us!!

Well as your consultant concludes you have lupus anticoagulant syndrome (LAS), Yes it's basically the same condition, with a different name, I too have the chest pains residual from the PE's and am lupus anticoagulant positive Aps/Hughes syndrome!!

I understand your need for a name hon, having a diagnosis makes a huge difference, as you can then find the support needed and no your not mad! I think a lot of us feel vindicated when we have a name for our illness!!

Hope you feeling well today.

Take care gentle hugs love Sheena xxxx

[MaryF Administrator]

I have a feeling that the nearest APS specialist is now Leeds! Somebody may know more than me however. Mary F x

[sheils]

Hi, I can totally sympathise with you...I had a dvt in 2010 and was told I had lupus anticoagulant antibody...didn't fully understand what that meant and was scared stiff...my GP couldn't really help explain things to me so I spent almost 9 months worrying about things like embolisms etc...really talked myself into a desperate state. However then got an appointment with a lovely haematologist who explained everything really well, actually listened to my concerns and gave me a diagnosis of Hughes Syndrome....and it was a relief and a sort of closure to my year of worry....I think once you have the diagnosis you can deal with the problem and get on with life. In fact the diagnosis cleared up a few other worries about a life with migraine headaches and two pregnancies with severe pre eclampsia, which I had always puzzled me. By the way, 2.5 years later I still have a slightly swollen right leg...doubt if it will completely go back to normal! Hope the future is kind to you.....Sheils x

[SusieMac]

An update - my consultant responded to my letter and stated it was 'academic' that I had Hughes Syndrome and offered to do more tests and checks as the pain in my left side is unbearable. I've got approval via my employee healthcare plan to go back and see him for a consultation and diagnostic tests. Now just waiting on the hospital giving me an appointment. In the meantime I have been sticking to my diet and have lost 10.5lbs in the last 6 weeks. Slow progress...