Possible recent diagnosis of antiphospholipid syndrome

I am writing this for my son. Twenty three years ago at the very young age of 30 he suffered a stroke and a month later another 4. Over the years he has had 11 in all and it is a wonder he is still alive. Obviously these have had a devastating affect on him both physically and mentally. His speech is bad, no short term memory to think of, doubly incontinent, unsure footage on uneven ground, bad sleep pattern, lethagy, short concentration span. He has literary not had much of a life really. At the beginning he had many tests and saw numerous consultants who said it was just one of those things as they did not know the cause! I recently insisted, because of the years that had elapsed, he saw another consultant as surely medicine had moved on now. He has recently been to the Nation Neurological Hospital and had so many tests mainly brain scans, lumbar punctures and blood tests the outcome of which is 99.9% antiphospholipid syndrome. The blood tests took 2/3 before this was diagnosed. Another blood test has been done and if this confirms these results he has been told he will then be referred to a haematologist for them to ascertain what is the best treatment for him. He has been told that he will probably be put on Warfarin or another more recent tablet. Has anyone else had symptoms like this over such a long period of time? Any info would be most welcome - thank you. Belle

22 Replies

  • Where are you from Zimmer?


  • Hi.... Sorry did I reply to this. We live in Kent, very near to Maidstone. Regards.....Zimmer

  • Hi Belle I'm so sorry to hear about the problems of your son. It does sound like you are getting somewhere now. The National is a good Hospital but you should ask to be referred to St Thomas Hospital if the diagnosis is confirmed.

    Sometimes people can have what's known as seronegative APS which is when they do the blood tests after a clotting incident and no antibodies are found. That's when you are told "it's just one of those things" because they just don't know what else to say! I am surprised that he was not put on warfarin earlier after so many clotting incidents however.

    I would also make sure he is under a specialist you is knowledgable in APS and you can find a list of specialists on here for your area on the top right.

    Good luck and I hope things start to improve.

  • Hi.. Thank you for your helpful comments.

  • Oh dear, I have just clicked on APS Specialists and I only got some posts on various topics. What have I done wrong. I was looking for APS Specialists in Kent . Belle

  • Hi Belle. Here is the correct link: hughes-syndrome.org/self-he...

    Dave xx

  • Hi.. Dave. Thanks for that, I found the info straight away. The nearest to me is Ashford, The William Harvey. As soon as the results are through I will asked to be referred there instead of having to travel to London all the time. Interestingly all the 'Specialists' are Rheumatologists not Haematologists but apparently that is because there is not that much known about the condition. Thanks again. Belle

  • Welcome to our forum, let us know how it goes, it is always interesting to here the outcomes once you have your referral in place. Mary F x

  • You are very welcome Belle. I have been to see Prof Hughes several times but have now found that the Royal National Hospital for Rheumatic Diseases (The Mineral Water Hospital) in Bath has APS specialists, so I now go there. We have set up a patients' group in conjunction with them too. Dave x

  • Are you in Washington?

  • Hi ... No, we live in Kent in the UK. ... Belle

  • I had a stroke and numerous mini strokes (tias) as well as Hughes. My stroke doc had me checked thoroughly and found that also had a hole in the heart. Many of us have them it seems and it ups our susceptibility to strokes. You might encourage them to check the PFO ( patent foramen ovale) which can be closed by going through arteries and inserting a device in the heart. I have had no Tia's since mine was closed.

  • Thank you for your advice. My son has had so many tests and there seemingly has never been any problems with heart rate, blood pressure or cholesterol etc. I am afraid we have to wait it out until the results of the latest blood tests come through........ docs. never seem to hurry themselves! I am so pleased you have had no further Tia's as it is all such a worry as to when it will happen next. Best wishes.

  • This is such a sad story Belle. I really feel for you and your dear son. I am puzzzled as to why he wasn't put on some form of anticoagulation right at the start. Who is supposed to be looking after him?

    I hope that he will get the help he so badly needs and that you will have more peace of mind regarding his care plan.

    Keep in touch and let us know how he gets on.

    Best wishes

  • Hi... Thank you for your kind words. Apparently the blood tests that he had last month take about 2/3 months for the results to be evident - hence we have the waiting game until they come through. They will not use Warfarin until they are sure so at the moment he is on a much kinder anti-coag. He also has days where he is very bright and 'energetic' followed by a day where he sleeps practically all day and has no energy at all....I guess this is another symptom. Yes, I will definitely keep everyone informed when the final diagnosis is made. Thanks once again. Belle

  • If you browse about this site you will see that Celiac and gluten sensitivity are often concurrent with Hughes. And many of us have found that our energy level improve on a gluten free diet. -- just be warned that if one goes on a gluten gree diet, subsequent blood tests which test for gluten sensitivity ( the GTT test) may yield a false negative. One poster to a Yank Celiac site who needed the positive blood work to qualify for benefits had to return to eating gluten,with all the attendent tummy issues and exhaustion, for 2years before his blood work turned positive. But a change in diet is relatively easy, so you might give it a try and see if the energy levels and ( what i call) brain fog improve.

  • Hi Belle,

    I live in Sweden (Stockholm) and I have APS since several years back. I will be 70 very soon and I want to tell you that I think that your son can be lucky to have a mother who can do this serching for an APS-doctor which is not easy. You must be at least 70 also?

    I am on warfarin sice 2 years ago and you shall not be worried if he is set on warfarin because it is one of the best drugs for APS. I have been helped like a miracle with the wafarin. Then I want to tell you that this site is so good with people that really care and know much from théir own illness.

    I wish you and your son luck in finding an APS-doctor. You will see it will be better now. Hope to hear form you!

    Kerstin in Stockholm

  • Hi Kerstin. Thank you for your kind comments. With the help of another member of this 'family' who forward a web address, I understand that there are two doctors within a half hour drive from me. I think I shall ask his doctor to refer him there - well at least ask his advice. At the present we have to wait at least aother 6 weeks for the results of the second lot of blood tests that he has had at the National neurological Hosp in London (who are all neurologists) and then also wait for an appointment to see a Haematologist. so by going to his local GP we could save time. Will keep everyone informed. Regards ....... Belle

  • Best of luck, you are actually putting the last couple of pieces in a complicated jigsaw, feel free to ask more questions for any fine tuning there is a wealth of experience on here, best wishes. MaryF x

  • Belle,

    I too live in Kent near Canterbury and have been seen by Robin Withrington.I was advised by him that my blood results were of no real significance (as other tests that my GP ordered were said to reveal).I am not suggesting that these tests were necessarily incorrect, just that they were perhaps only part of the overall picture.I had a dvt and this was probably the clincher for St Thomas' ,where I managed to get a referral from my GP.If at all possible I would push for a referral to St Thomas for the most accurate interpretation of results.Incidentally I find it astonishing that blood results could take so long to process.My local GP results took around 6 days and St Thomas' didn't take much longer.Two to three months sounds ridiculously long.Your son's case sounds pretty cut and dried but if ,for some reason the verdict is not definitive locally, I would push for St Thomas'.It is a fairly simple journey from Maidstone-train to Victoria and a taxi to St Thomas'.The taxi should only cost around five or six pounds.

  • Hi StevePT.....My son started off at The National Neurological Hospital in Queens Sq. London. It is the neurological wing of University College Hospital, London and is supposed to be top notch. He was sent there firstly as it was thought that brain function was the cause and of course had these blood tests when damage to the brain, apart from that caused by the strokes, proved negative. The 'advanced' blood tests that he had to have which take the time are what showed APS. To make 100% sure before sending him to the Haematologists in UCH Hospital the blood tests have been done again. It is all a mine field isn't it. The journey to UCH is quite easy really - train Barming to Victoria and then the tube to Warren Street. I have been doing the journey for 10 years as I myself have cancer which has returned three times and UCH is where I am treated. It is difficult what to do for the best. Actually his GP did not suggest anything, it was only because I decided that 20 years of strokes and that medicine has moved on in that time... I insisted on him being tested again but the doc. was not too kean and in fact said that he did not think it would make any difference but I insisted. Now I wish I had done it many years ago instead of just taking their word for it. Thanks for the advice. Regards.....Belle

  • Interestingly I was at Queen'Square recently where the neurologist was convinced that I don't have APS.There seems to be an ongoing battle between the neurologists (who seem not to believe in APS) and the haematologists/rheumatologists who of course do.As you say , it can seem like a minefield at times.I would certainly go to UCH over the local hospitals.Finally,good luck!

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