newly diagnosed with 2 positive blood tests and previous stroke

hi all I have had a stroke 3 months ago and I have 2 positive blood tests for aps and I have been sent to a haemotoligist for a final diagnosis as my neuro wont give me a yes or no answer on whether I have aps I have many of the symptoms including extreme tiredness,joint pain,stomach pain,leg pain,in my lower legs,shooting pains in my head and daily dizzy spells all of which is stopping me from working as I am a builder some days I feel like I feel much better and start thinking about getting back in the mix (forgive the pun) but I know from experience that its just the calm before the storm I have had 2 years of health problems the scariest of which was I lost 4 stones in weight (before I had the stroke) in just 4 months and doctors were baffled as they say there was nothing wrong with me even after I have had a stroke and 2 positive blood test my neuro will not commit to a diagnosis he has put me on clopidogrel 75mg a day but I haven't had any significant improvement does this mean that its not going to ? will symptoms get worse as times progresses ? im going out of my mind with worry my debts are mounting up and I just see no end to this abject misery that this has caused please help me my neuro and stroke team have been very supporting through my stroke recovery but is it all going to be for nothing I mean will I have another one before they get it under control or will I just keep fading away till theres nothing left please help me colin

ps I am a 35yr male 6ft 3 inches tall and I now look like a stick insect

10 Replies

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  • Just reading here, are you continuing to loose weight? A vary rare consequence of APS is that you can get damage to your Endocrine system (petuitry, thyroid, adrenals) which can also cause some of the symptoms you are talking about. Have they checked these things to see if any of your levels for these are out?

    There will be others on here that will come up with some good advice as well, but it could also be worth getting your endocrine system checked.

    Good luck with it all.

  • The reply above is good to mention thyroid issues, it is very typical to have thryoid problems. You need to be under somebody who understands APS/Hughes Syndrome in it's entirety, do please take a look at our data base for clinicians who understand this. Unfortunately neurologists often fail to understand or skill up when it comes to this disease. However to have a diagnosis through tests is a good starting point. They need to fine tune your anticoagulation and also make sure your thyroid is thoroughly checked. Some people have to also take themselves to London Bridge in addition to using the NHS. Please come back to us if we can help you any further, also there may be members in your own area who can help further if you say where you are. Please let us know if you need further detail. Mary F x

  • thank you for your replies tigger and mary thankfully since putting me on clopidogrel my weight loss has levelled out and have started putting a little bit of weight on and I am also on omneprosole for gastritis and im now able to eat better I don't know whether I have had my thyroid checked out or not my neuro is typically vague about whats been going on with me it may be the case that they haven't done it I will get in touch with my neuro dr raq kumar and see what he says I live in Liverpool and my neuro is at fazarkely hospital in liverpool rdu clinic if anyone could help me out it would be much appreciated and thank you for the prompt replies

  • Im not sure why your Neurologist wont give you a dx with two positive blood tests, especially after a stroke! I would have thought he would have put you straight on warfarin but thats Neurologists for you........

    I would most definitely get yourself to an APS specialist as soon as possible so that your medication can be sorted out as its obvious that what your on is not controlling your symptoms. Although post stroke 3 months is very early days....my Doctor told me after mine it takes the brain from 6 months to a year to properly recover. That does not mean to say you will take as long as that but if you rush back to a manual job too quickly you will regret it. Perhaps you could think about doing something thats in the building trade but not labour intensive?

    And the thyroid connection is very important as mine went all over the place after my stroke too and you may even find that your stomach pain may be a gluten reaction as Celiac Disease is also linked. I found that after my stroke all these issues seem to flare up. I cut out Gluten and it helped a lot.

    Anyway, here is your nearest specialist that you need to get your GP to refer you to.

    Vanessa Martlew

    Consultant Haematologist

    Department of Haematology

    Royal Liverpool University Hospital

    Prescot Street, Liverpool

    MerseysideL7 8XP

    Telephone: 01517 064322

  • Hi Colin.

    Welcome to our site.

    I agree with Mary's & Lynn's advice to get an APS specialist on board; neurologists seem to be the worst consultants when it comes to APS.

    Best wishes.

    Dave

  • I may have had the only neurologist on the planet who spots, diagnosis and treats APLS! Who'd have thought West Virginia would have a suprerior specialist in . . . Anything!

    As to stroke recovery, we now know that the brain's plasticity extends far beyond the childhood years. Read, work math problems, fiddle about with a foreign language, paint, take up a new musical instrument, and search online for safe balance improvement exercises. Anything new that stimulates the brain can help. Just don't overwork and stress your brain!

    Hang in there. I'm sure a diagnosis is on its way!

  • thanks guys I got an appointment for my haemo on Thursday not the right one I might add but its a start i will see what they say if i don't get any solid answers i will ask to be referred to the royal Liverpool hopefully they can get me on the right medication and sort out this nhs mess out if they don't then i will have to go to st Thomas which will cost an arm and a leg but if i cant work atm then its got to be worth it so i can start earning again and thank you for all your help i will post an update on what going on colin

  • hi guys I have just got back from my haemotoligist dr shiach and she says I dont have aps but its borderline whatever that means !!!! as my latest test result showed clear for anti cardiolipin but I have tested positive for factor 5 which she says in hereditary and another one came back positive that I don't remember the name of my memory is not good anymore bit there are phospholipids could you tell me what it means im lost :( she said that I have a high risk of clotting and having a long family history of strokes and heart attacks have been put on warfarin for life ive also got to get ultrasound scans of my liver,spleen and anything else that's around the lower abdomen basically what does it mean ? I still don't feel like ive got anywhere please help !!!!

  • So its good and bad news then! We have some members on here who also have Factor V Leiden. I have got you a link here so you can read about it and then you can do some more research if you want to. At least the good news is that now you have a dx you will be monitored for life and if APS is a possibility it will be picked up (given that they said it was borderline.) Even if you did have it the treatment would be the same as what they have put you on which is warfarin.

    We have other members who have both and they may pop up if you post a question on Factor V Leiden. Also remember you are early on with your stroke and you must give yourself time to heal. I know you are worried about getting back to work because of finances but if you push yourself too far too quick you will take longer. Slow and steady and you will get there.

    Here is the link and please let us know how you are getting on.

    en.wikipedia.org/wiki/Facto...

  • Oh and I should have said that if you want the details of your test results so you know what you have tested positive to, call up Dr Shiach's Secretary at the Hospital and ask her to send you the results. Its perfectly normal for her to do that and you have a right to the test results so dont feel bad about asking for them.

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