My story

Hi all, I have been a member of this site for several months now, but have found it difficult to tell my story as it seems kind of pathetic compared to some which I have read. For over twenty years my body has mimicked several ailments but when tests are run to confirm them they come back negative. My last major "diagnosis" was approximately two and a half years ago of Right sided heart failure the testing once again determined that the diagnosis was

incorrect but the clinic at which I was being seen referred me to the Lipids clinic where I met a really great Doc who ordered several blood tests and took note of everything I said along with my family history (I have had two siblings die from DVT) and I found myself being seen at the Haematosasis and Thrombosis clinic at St. Tommys under the care of Professor Hunt, after two positive blood tests I was told I had Sticky Blood/ APS, however every letter sent to my GP says that I am under investigation for APS, I have spent so many years with health problems that have never met with a definite diagnosis that I dont/didnt really ask questions I just accepted what I was told and dont complain if some new symptom pops up, however by visiting this site when I went to see the haematologist in May I asked a few questions the main one being do I or dont I have APS and apparently I consistently test apL positive but because I dont have a history of DVT, PE or TIA they will not confirm I have APS. At present I am only on Aspirin and Plaquenil still feeling unwell most of the time and as of the last two weeks all of the time. My symptoms are as follow: Headaches, Tiredness/Fatigue, Joint pain, Dizziness, Chest pain, Swollen legs, feet, hands and head (some days my glasses leave really deep ruts in the side of my head they are practically wedged there),Light headedness which causes me to lose my balance and Gastro-Intestinal problems. After reading one of Prof Hughes blogs I decided to try and pinpoint when all of this started happening, I thought I had been a relatively heathy youngster but when I went back to my childhood apart from normal childhood illnesses (chicken pox, measles etc) I was diagnosed with Anaemia at six months and was on medication for that for at least seven years and I was plagued by conjunctivitis and boils aside from headaches and visual disturbances. Sorry its been such a long boring blog I did warn you Paddy that I tend to waffle lol. And thank you to everyone for giving me the sense and courage to start asking questions as it is my life and my body.

13 Replies

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  • Hi Alison

    Welcome hon and glad you found us. Thank you for posting your story, is good to get to know you, it took me several months to post mine. Your story is sadly familiar and so similar to many on here, by the way its far from boring. Every story sheds light in the darkness for others.

    Im glad you're being seen and treated by Beverly Hunt at St T's. It sounds like you may need more than aspirin, if you still struggling.

    With Aps we all have to be our own advocat (spelling) and push for help and diagnosis, treatment.

    I hope you feeling ok today and feel free to ask, if we can help we will. Paddy's great is'nt he, had a great laugh down London in may for Hughes patients forum.

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

  • Hi Sheena I did reply to this yesterday but it seems to have disappeared or I did something wrong in my befuddled state (sorry par for the course I'm afraid). Thank you for your kind words. I think you are right about needing more than aspirin, I had a problem with my left calf on my return from Turkey recently two doppler scans were inconclusive but I was put on fragmin for a week as a precaution and aside from having to inject yet another medication I actually felt better than I had for a long time. Haemo made an appointment for me to have an angioplasty ultrasound which is a deeper scan than the doppler, I had that a week and a half ago but dont know the results yet, all I really want is to feel well and get my life back the same as all of us on here really. Take care Alison xxxx

  • Hi Alison

    I know about the befuddled mind, I think a lot of us understand that one!

    I'm glad they are checking and hopefully will treat more intensively! It's a big indicator that you felt so much better on the fragmin, keep pushing with doctors on that hon!

    Is one of my biggest wishes, that we could all have better days and feel well, I'm not greedy just a few now and then would do!! :-) :-)

    Take care gentle hugs love Sheena xxxxx :-) :-) :-)

  • Hi Alison,

    I am surprised they say you are under investigation for APS? your history is so strong and you are suffering from what sounds like an overlap of other auto immune conditions associated with APS - sadly time before reviews can be months and i have heard Prof Hunt is excellent - if you are anything like me i forget to say certain things important symptoms as well so i now email doctors perhaps you could put all your history down and send it to prof Hunt secretary so she can study this so when you do see her next she can draw from your email and extract more info from you? just a thought hun but welcome and im glad you have posted. take care kathy xx

  • ps have they said you have lupus? have you had any children? gosh i think im in work mode now ;-)

  • Hello, thank you for your highly informative blog which made very interesting reading, yours as valid as the next one, and I pick up on your frustration, so many of us have histories like this. The more we all tell our personal history the better. It does sound as if you have it, it is just to what degree, things ebb and flow. I am only on aspirin and plaquenil also, and I am glad that St Thomas' are involved with you, Mary F x

  • Hi Kathy, I have lived with weird symptoms for so long now I have come to accept them as part of my make-up. Until recently I just accepted without question what I was told as in the past being mis-diagnosed made me lose faith in any of the medical profession, but since finding this site I have actually started asking questions as this is alien to myself I am breaking myself in gradually lol. After reading one of Prof Hughes' blogs I did feel it would be beneficial to me to put as complete a medical history down on paper and let someone in the know read it.

    I do have two grown up children, with the first I had pre-eclampsia and haemoraged quite heavily after giving birth to my second as far as I am aware I have never had a miscarriage.

    They continually test for Lupus but tests are negative so have tests for under-active thyroid been, I dont think haemo are entirely convinced about the Lupus tests though, that could be to do with my very red cheeks and chin!!!!!! as letters sent to my GP say I continue to present with Lupus like symptoms. For all of this I feel very blessed to have got this far in life without having had a clot, a PE or a TIA obviously I would prefer not to have this horrible sludge blood and now that it is known that I am more suseptible to these things I feel I am being taken good care of by St T's at least. Best wishes love Alison xxx

  • Hi Mary

    Yes thank goodness for St Thomas'. Best wishes Alison xxxx

  • Hi Alison i totally agree given your history you certainly dont want a clot just to tick a box prevention is the priority and this was said only recently by prof Khamashta when he spoke about apsACTION.

    Having pre eclampsia can be indicative of APS & some people do have normal pregnancies and go on to develop symptoms later - we all are different and i guess all you can do at present is keep a diary of your symptoms - i do on my mobile phone - if i write it on paper to keep safe i would never remember where that safe place is ;-)

    keep safe kathy xx

  • Alison,

    Thank you for sharing. I don't understand, like you, what the doctors mean when they say you have aps and then years later they say it doesn't show up. The way I perceived it was aps can go into remission, still not sure...?

    Your symptoms are just like what I'm experiencing. I didn't mention the intestinal problems in my post of oddities of symptoms.

    Are you too thinking of why one can't given a diagnoses.? I'm going to hemo doc tomorrow and hopefully from there I'll get some advice on further treatment and possibly looking into long term help for my illness.

    xxto all

  • Hi Mommaleda, well basically I only became confused as after my second blood test I was told I had Sticky Blood/APS but all the correspondence that is sent to my GP (of which I get a copy) states that I am under investigation for it. I consistently test apL positive (dont think I have ever had a negative result since the testing began) but because I have never experienced a DVT, PE or a TIA they will not give me a diagnosis of APS only that I test apL positive and really I would like to stay apL positive if it means the absence of any of the above I actually consider myself really lucky I have learnt to live with ill health for such a long time but at least I now know what is causing it. When you go to haemo ask them what is actually going on with you they should be able to ease your confusion a bit. Good luck with your appointment and take care xxx

  • Thanks for your story Alison. So I'm not the only person who once got deep red grooves in the nose from wearing glasses? I had a spell when that happened a lot -- looking back through time this happened during my "its mono but its not mono" years. I thought it weird at the time, but I already was getting the vibes from doctors that since my "mono-like" illness was hard to understand I therefore must be making up symptoms. (Talented booger wasn't I -- that I could 'make up' blood lab results?)

    So you see -- you apologize for length, but I glean a small detail which sends lights popping on in my head. Thanks.

  • Glad to of been of some help Gina, I am surprised we havent all been accused of Munchausens by proxy or otherwise as sometimes we are treated as if we are making everything up. As for the grooves/ruts I get them along my temples where the arms go, I thought I was some sort of freak and never told anyone until the Doc at the Lipids clinic. Take care and best wishes love Alison xxxx

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