Hi I had a stroke in February had lots of test no one was telling nothink was so down at no knowing a think then was told I had APS I have been so tired all the time pains all over bad heads arthritis in my hands and bad left hip had to give up work wich I don't like I have always worked I am 53 I am on morphing now and warfarin and gabapentin pracetamols too it is helping with pain but my ankles are swollen and I feel hot but cold and Clammi to toch . Some time I can not get out of bed in a morning I am in that much pain my hubbie as to get me out but he's not always there I also have to go on all four when going up stairs because I have no hand rail I have asked for one to be put up but have to wait 12weeks for it and money a bit tight now I am not working sozz not good at putting things down it fist time I have been on here thanks Lesley 61

5 Replies

  • Hello Lesley and welcome.

    May I ask you a few questions to enable us to help you more easily?

    Who diagnosed you with APS?

    Who is managing your APS treatment?

    Where are you from?

    Best wishes.


  • Yes it was a neurology Dr BEDefalla in Huddersfield and Dr HYSadik rheumatology but she now on mat leave the first reurology I seen discharged me he did not know nothink about APS but the I got a call to go see this next one and she did so god know who I am going to get this time thanks Dave PS as I sed I am not good at writing thing down I have dislex don't know if that's how u spell it

  • Hi Lesley

    Have a look at this link from our charity's website. It is a list of APS specialists in various areas, so that you can get your GP to refer you to an expert near you.



  • Hi and welcome, lots of mutual support on here and don't worry you are not the only person with dyslexia. I see that Dave has sent you the suggested list of specialists. MaryF

  • Hi, Hope you could find an APS-doctor on the list that Dave sent you. It is very important to get a doctor who understands all the symptoms you talk of . So very few doctors understand this illness.

    An APS-specialist can also distinguish other autoimmun illnesses like Sjögrens, Lupus or even Thyroidea that can be connected with this illness and so you will be correct medicated and have the right drug.

    You have got a diagnose and that is good. So many on here have had trouble with doctors that did not understand them before they at last got a diagnose.

    So now you have to get that APS-doctor.

    There are very good books available on Hughes Syndrome Foundation Charity website. I prefer "Sticky Blood Explained" by Kay Thackray. (Sticky blood is the same as APS.) She has got APS herself and writes about the different symptoms and how it is to live with APS. I have it in pocket and it is very good indeed!

    I have now good anticoagulation and feel a lot better. I have an APS-doctor in Sweden.

    Best wishes to you and I hope you find your APS-doctor.

    Kerstin in Stockholm

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