Any other men with APS?

Hi, my name is Sam I am 42 years old and live in Cornwall with my wife and 13 year old son. I was diagnosed in 2011 after suffering a huge PE at the beginning of 2011. Because my local hospital couldn't find a reason for the PE they decided to refer me to St Thomas's and was then given the good news. I never really recovered fully from the PE and have since had a number of other issues. My health deteriated in November 2011 after a minor operation and has now resulted in me being retired from my job of 27 years. I have terrible memory problems and have now devoloped a tremor and have trouble with mobility, muscle and joint pain. Currently my medication is clexane, plaquinal, codine, fluexitine and slimvastatin. I have also been referred to a nuerologist to try and work out what is causing the tremor which is awfull, they don't seem to think that this is part of my APS. Oh well that's me. Whats ironic is that they say Hughes can mimic symptons of MS and my wife was diagnosed with this 3 years ago. We make a right pair don't we.

15 Replies

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  • Hello Frank and a warm welcome to HFS. Im doing a spot of moon lighting from my Forum but I also have APS!

    You sound as if you have been through the wars and still having a few issues to deal with.

    Its really good that you have had a quick diagnosis and been sent to St T's, as they are the best. I am confident that you will get the best care and advice from them.

    Many people struggle to get a dx so you have done very well and thats half the battle knowing what you are dealing with.

    HSF has loads of info which is worth reading on their website and this is a great place to come for any questions or support.

    Probably catch up with you again soon.

    Take care

    Lynn

  • Hi Frank

    Yes a few blokes on here with APS. I am Garry (50) I had a stroke mide flight Exeter to Belfast in Feb 2007. I am up the road a bit from you in Glastonbury Somerset. I too ended up at St Thomas after 9 months of mis diagnosis my local haemo suspected APS and then referred me to St T. Put on warfarin, Plaquenil and gabapentin. When I was able to get back to work after almost a year off I decided to start my own business, I have never looked back.

    My INR is 4 to 5 and I take 4.8mg warfarin per day at breakfast time.

    Still have the fatigue, balance / navigation, memory, spelling, and some times speech slurr problems that we all get with this illness and left weak on my left side (stroke) but I know I am lucky.

    Look forward to reading more of your posts.

    BR

    Garry

  • Welcome Frank, quite a few guys on here, all with quite a similar tale, glad you found us... and plenty of support on here. Mary F

  • Hi Sam,

    Yes, you are not alone !! It would seem that my story is somewhat similar to your own. I am on Warfarin, currently 18mg to keep my INR between 3 & 4.

    I was retired by the company I worked for four and a half years ago.

    Mobility problems, muscle/joint pain, shakes (or tremors as you call them) and memory loss are all problems that I suffer too. As well as burning pains and 'dead' patches. Currently my right leg is 'dead' from the hip to the knee, but I am told this is nothing to worry about !!

    St. Thomas' I would say is the best at looking after patients like you.

    Good luck and keep taking the tablets !!

  • Hi frank,

    Welcome to the group you ate not alone there are a few men on here me included lol

    I had my first stroke ay 16 which left me using a wheelchair and a whole load if questions I had a whole rang of symptoms was diagnosed with aps, raynaurds and fibre and c3 neropathy was put on blood thinner not waferin tfhen in 08 had another stroke which did mote image now use electric chair and with the tiredness and pain drives you nutd.

    We all on here to help please do ask if need any information

    Paddy

  • Hello Sam, and welcome to HSF. I'm Chris. I had a stroke in 2004 at age 26, resulting in some minor nerve damage and partial seizures. My "sticky blood" had also caused some kidney damage and vision loss. Was diagnosed with primary APS shortly thereafter. All this in a span of 9 months. Taking 10 to 12.5mg warfarin nightly and an INR 3.0 to 3.5.

    Unrelated to APS. I have Benign paroxysmal positional vertigo (BPPV.) Also have arthritis in my last thoracic vertebrae (T12) due to a childhood injury, fell on a cinder block.

  • Hi Sam, there are quite a few men on here for you to chat to!

    I am sorry to hear tho' that you have Hughes & your wife has MS, I hope you find these Hughes forums of use, we are always there to hopefully answer questions & give support wherever we can.

    All the best to you, your wife & son :)

  • Hi Sam

    I'm Dave from near Bath.

    I was diagnosed with APS in 2002 and put on Warfarin, by Prof Hughes, with an INR target of 4.0. I did reasonably well on that regime but had a clot in my right hip in 2006 and a silent stroke sometime between Feb 2010 & Sep 2011. I now suffer from frequent 'funny turns' (a sense of being pushed, followed by whistling in the ears and shakiness, dull head, memory problems etc) that Prof Hughes agrees are probably TIAs. He has agreed that I go onto fragmin shots and stop warfarin, as a trial, to see if it makes any difference.

    Good luck and keep in touch.

    Dave

  • Hi. My APS was diagnosed in 1997 after bilateral PE which eventually left me with ~95% blockage in both pulmonary arteries. In 1998 I went looking for a second opinion as my condition was deteriorating rapidly. Met a cardiologist who had worked in San Diego where they specialized in surgery to unblock these arteries. The surgery was complicated and very expensive but I walked out of the hospital nine days after surgery and flew home a week later. I also had a Greenfield filter inserted in femoral vein to minimize risk of further clots getting to my lungs. I am currently on 9/10 mg warfarin with an INR range of 2 - 3.5. I am reasonably active but know my limiltations.

    David

  • Hi Sam

    Tim here near Exeter. Recognise many of your symptoms feelings about this disease which I've had for about 40 years. Started off with multiple PEs in the early 70's that left me with barely half a lung working initially. Quite a few 'incidents' since then,oddly enough like Gary including a stroke on a plane (but warmer climes from Athens to UK) and multiple TIAs. After years of countless tests on everything a stroke doctor suspected a hole in the heart (correctly) and touch wood no more TIAs since I had an amplatzer device fitted.

    Forced to retire because of health in 1990.

    Have been a lot better since I saw Prof Hughes a few years back and he gave me a target INR of 3.8 to 4.0 (3.9 today proving to those doubting doctors that we can do it) and test every other day.

    Can still very much enjoy life despite all the limitations which, as David says, is something one needs to get to know.

    Never heard of any other man with the same problems until around 2002 when I heard of and joined HSF and saw that a few of us were around.

  • Thanks for all the comments, I am beginning to understand my own limitations something that I have found very difficult. It's reasuring to hear that I am not the only one with the symptons I have listed. My only other wish at the moment would be that my GP and local hospital listen to St Thomas's and that they all start to communicate with eachother because it seems to me that my GP and local hospital have no understanding of the condition although my GP has been a good deal of help. I hve to see him again this week because I have developed a large cyst at the base of my spine and I think it will need to be removed. It just feels at times that there is no end in the problems I am having. Thanks again for your comments I really appreciate it

  • Hi Frank

    Another man on here! I was diagnosed with APS in 2005 after a stroke and a PE. I still get problems with vision, memory, speech, balance, nausea, skin etc etc. It is a very frustrating illness, because I can be fine one minute and terrible the next. I was away at the weekend and on a walk in the New Forest, and I was absolutely fine. Then I just felt extremely dizzy and just couldn't walk for about 15 minutes. I felt embarrassed, but there was nothing I could do about it.

    I have problems with both APS and my Stroke, but because 'I look OK' I find it very difficult to find people who understand the issues. You won't have that problem on here though.

    Good luck with it and don't be afraid to ask questions on here, it really is a very helpful forum.

  • I live in the United States. I am 48 years old. I have four great veins in my right thigh that are totally blocked from my knee to my groin. They tested me for APS and I have had several positive results for the Lupus Anticoagulant. I take Coumadin and wear compression socks daily. Three times a day I use air operated leg sleeves ( subquential compression device) to compress my legs to force the blood out of my legs. I constantly worry about more clots in my legs, since they can't regulate my Coumadin. If you have APS, is INR level between 2.0-3.0 sufficient or should in be higher?

  • I have Lupus Anticoagulant but can not take it any more as I am now also like you on warfarin. Then it will show ev a false bloodresult.

    I also wear compression stockings.

    I am on an INR of 3.2 - 3.8. What is your therapeutic level set by your Specialist of APS (You need to have a specialist!!)?

    Sounds you are on a too low INR level. I selftest and if i go under an INR of 3.0 I have to take a Fragmin-shot. If you are under 2.0 your aren not at all anticoagulated. That could be dangerous indeed as to further clots!

    I Think you should put an own question here as you have answered on a 4 year old question. You will get better answers from other members and also where to find your APS-Specialist if you have not found him yet.

    Best wishes from Kerstin in Stockholm

  • Thanks Kerstin. I am new to this site.

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