A brief introduction

At 27 I have been on warfarin for 5 years with a constant fluctuating INR I have a history of clotting problems the last was very near fatal, I have had numours tests and it was determined I have a unspecified hereditary clotting disorder, so far Hughes syndrome appears to be the closest match to my 'condition' ( although this connection has been made it has been disregarded) however tests performed some years ago proved negative to many known conditions, I am at a loss of where to turn and concerned for the future health of my Surviving children. I do wonder if there is a form of Hughes Syndrome that has not been identified yet....and if so wether there are other people who have a disorder that has no name, and feel as frustrated and alone as myself, it is hard to explain to doctors how much of a struggle everyday life can be and know they push you aside as they have no understanding of it, and therefore nothing to compare to. :( I just wish someone would try to help.

16 Replies

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  • I am so sorry to hear this! I have a similiar situation. I am 30 with 3 young boys the doctors didnt know I had Hughes when I was pregnant with my oldest son so he was born weighing 3 pounds and barely clinging to life! He has a lot of health issues due to this. My 2 son was fine because I was diagnosed and gave myself lovenox injections. With my baby boy we both almost perished because I had a blood clot in my head. Now when I go to a doctor and tell them whats going on they dont get it. Not many people can understand what its like to have chronic fatigue and severe pain all while trying to raise young children! Everyone here is very nice and they understand first hand how bad the daily struggles are! This is genetic for me as well out of my grandparent kids all 4 of them have Hughes and I too am afraid for my children. My family is small because all but 1 of my cousins died at birth and my sister! This is so scary!!! I hope you can find some answers soon and until then we are always here for you. Good luck!

  • Hello Becky. I am so sorry you are having such an awful time, two out of my three children appear to have problems, nasty migraines etc, and now my oldest showing up a similar autoimmune thyroid profile, and both my sisters,and my departed some years ago father, problems with blood clots and some miscarriage. . I hope you can get a referral to St Thomas' if possible and see Dr Kashmata who is particularly good with what I and others are considered to be - 'seronegative hughes syndrome' I also have a lupus marker in my tests results plus other autoimmune disease. Maybe others on here will have ideas for somebody nearer who would be good to see. Please stay in touch and we will do our best to Help. Another option is Professor Hughes himself, privately at London Bridge Hospital. You can self refer there, it is certainly the best money I spent, when nobody in my area would refer me anywhere. His letters made all the difference. Mary F x

  • Hi Becky

    welcome and glad you found us. So sorry to hear what an awful time you having, not knowing is horrible. At least with a name you know what you battling.

    As Mary says there is such a thing as sero negative Hughes syndrome, a fact that seems to be little known. I tested negative too for antiphospholipids and anticardiolipins, but eventually was diagnosed at st thomas's with lupus anticoagulant positive Hughes syndrome, lupus symptoms overlap and fibromyalgia etc.

    Push for a referral to st thomas's, or London bridge if you can afford to go private.

    My haematologist at royal derby has some knowledge of Hughes syndrome. So follows up with treatment.

    I hope you can get help soon hon and hopefully feel better.

    Take care gentle hugs love sheena xxxxxxx :-) :-) :-)

  • Hi

    I have APS, LUPUS ETC ETC and unfortunately my 16 year old daughter has it too, she is just on Aspirin, she has been positive for APS but the last couple negative. Because of this, they said stop the Aspirin, but being as I am a sufferer and my late mother was, I said I prefer if she continued until seen at St T.

    I worry about her - the slightest headache - my head thinks this and that - but with her A levels etc obviously she has the tension headaches. Unfortunately I lost a boy (stillborn) due to APS and at the time did not know what it was. Thank goodness that the hughes syndrome is here, I have learn't so much.

    Take care

  • Hi hunny,

    I'm so sorry you have been through a bad time, its the same old story isn't it: not being listened to :( don't even get me back up on that soiap box !! :/

    Good advice lready given in all the above, push to get a appointment at St. Thomas' in London if you can or keep changing docs until you find one that will keep going until a diagnosis is given.......dont give up......

    My youngest son is now 19 & hes just started having the odd migraine, gets pins & needles in his feet & legs & has often said a couple of other stuff...including mixing words up when talking :( he sounds just like me some days......I think we end up being paranoid in the end maybe it isn't a start of Hughes with him.....but you feel you should ask them to be checked wether docs want to or not these are our loved ones at risk!!

    I hope you find the answers you are looking for, keep pushing, Sue xx

  • Hi Becky

    I would echo everything Mary and the others have said. I am seronegative and like you and the others had a long road to diagnosis even after a PE and Strokes. I ended up going to London Bridge and Prof Hughes and now under Dr khamashta at St T.

    Even after that I still encounter the odd person that scoffs at the dx although my GP is fine. I think you are always going to get those that will challenge a decision just because they can't see a result on a blood test. But I know what I have, I am happy with what I have been told, I trust the Hughes team and that is all that is important to me. I have learnt you have to stand up for yourself and your body sometimes.

    I really hope you too can get referred and get a diagnosis that you can be happy with (you know what I mean) so your treatment can be optimised.

    As Sue says, keep pushing. Lynn x

  • hi beck - i was dia. with huges 6 months after many clots found that was in feb.2009. still had problems- finally i went to rheumy in nov. 2011. after 29 blood tests they found l.a. , protein s and c deficiencys and other problems, i guess what im saying is dont give up, get rite back at them as best you can, it took me 20 some odd months to finally get this mess sorted out . best of luck with this --------------------and we are here for you anytime you need us---------- jet

  • oops also beck , the inr s being all over the place has been a nitemare with me - they test my inr evey 3 days- to try to catch me before i spiral up out of control or end up plumeting down way to low. this is always a work in progess with me. keep the chin up - sorry about the memory lapps - just having brain cramps this morning!!!!! ------------------------------ jet

  • sheena -- good to see youre back , hope your feeling better than you were, its nice to see the smiles in your words ???????????????? jet

  • Hi jet

    I'm always smiling hun, no use doing anything else!! Suzy and the girls coming up here tonight, drink lots of coffee and chat hughies language, rest of the pub will think we're the entertainment, will see about some photos.

    I hope you well.

    Take care gentle hugs love sheena xxxxxxx :-) :-) :-)

  • :) :) :) :) :) :) :) :) :) ;) ;) :) :) lol!

  • Wow thank you all for for replying to my post I wasn't expecting anyone to reply I guess I was just frustrated, but do feel a sense of comfort from the kindness you have all shown me, at least it seems I'm not going crazy after all.... I will certainly try to push for the referral to st Thomas's , I'm waiting to see a local haematology consultant after my inr hit its all time high of 47.8 last week it was terrifying, but on the mend so to speak and now back at 3.0 phew... :) I will let you know how I get on when I see him and will deffenitly mention the advice you have given me and the hold on to the spark of hope you all have helped ignite, I cannot thank you all enough for that I hope through this site friendships can be made and awareness can be pushed forward for all of us. Take care xxxx

  • Hi Becky,

    all people will get a reesponse one way or another and we happy to help.

    Paddy

  • Hi Becky

    you welcome hon, i hope all goes well with haematologist and you get the help you need.

    We always here if you need to rant, moan or share the good days too.

    Take care gentle hugs love sheena xxxxxxx :-) :-) :-)

  • sheena - remember laughter good medicine - a quote from my belovered dc mccall . do give suz my p ersonal info for me ,as you know i had some problems with this site - thats why i dont put it out here. many thanks my pretty your humble servant ,----- benny jet

  • Hi jet

    i passed details on to suzi last night hon. Hope you ok today.

    Take care gentle hugs love sheena xxxxx

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