Seen by haematologist - no further forward at moment

Hi everyone thanks for your help with preparing for appointment - I was well armed when I saw haematologist today. Not got much further really. Apparently when I was pregnant/having miscarriages (2004)they did 2 tests, but only told me about one. One test positive for lupus anti-coagulant, one negative. They did treat me as if I had APS and this was clearly put on my file. Haematologist looked at blood history and said unlikely have APS, then when I told him about the late miscarriages, he said I could have it!! More bloods taken today, when I said can you have negative readings and still have it, he said oh we'll put down Anticardiolipin test as well. Have to see him in 3 weeks, in the meantime scan on my leg tomorrow as have had pain/numbness in thigh since surgery on 28 June. In meantime still on 60mg clexane, surgical stockings, iron because of blood loss, for 3 weeks when I go back to see him. He said something about only APS if 2 or more occassions of clotting, would treat miscarriage as one. He said he wasn't an expert in APS although he said he knew something about it (-a relief???). No further forward, feeling a bit angry, if I haven't got it I've been subjected to unnecessary treatment and surgery with breast cancer (couldn't take tamoxifen because of clotting risk, so 2 1/2 years of injections to shut down my ovaries then an oopherectomy - early menopause etc) - if I have got it then unnecessary risks in surgery etc. He said as only "one incident of clotting" would only put me on precautionary treatment if in high risk situations - further surgery, long-haul flights, pregnancy (er difficult without ovaries..), if tested positive for APS. Is that what happens then? i know each person treated as an individual, but not sure if I like the let's wait and see situation. No private health insurance, but would be willing to pay private if any suggestions, or if people have experience of expert diagnosis/treatment. Very frustrated, any help/information gratefully received, thank you Alice x

8 Replies

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  • Alice you are repeating a similar story unfortunately but we will try and help where we can. If you can tell us where you are situated that can also help guide us a little better.

    In the mean time it looks like at least they are doing the right tests. lets see what they show.

    Try not to worry too much I know thats easier said than done. Im sure others will be along to also offer more support. :-)

  • Hi Alice, i'm afrid i dont have any type of answer for you, but you do have alllllll my sympathy. I am going for blood screening tomorrow, I had the lupus test 5years ago and was neither positive or negative, and i have plodded on since, wondering what my next option was, then a few weeks ago found this site, and found the courage to ask my GP for full screening again...so tomorrow it is....its devil and the deep blue sea stuff...you want them to ''find'' something so you can say AHA!...and get treatment where you can and maybe improve you life...and on the other, you don't anything to be found..its a confusing time. I wish you well Sarahx

  • Hi Alice myself and lots of us on here have had hell trying to get sense and diagnosis in terms of APS. I am seronegative hughes, and saw Professor Hughes privately and now also go to St Thomas' but it did involve literally years of pushing for change for myself and my children. I am sure things will get better for you

    Mary F x

  • Alice, I completely understand. I just finished today seeing a rheumatologist :( wow- I had 3 strokes in 2002, had tests done, history of one early miscarriage, then went out of state for a second option because I (at the time) didn't want to believe any of it. Now, ten years later I've come to grips with it and have been shown that APS has taught me a lot about life. Then today the dr says well, "if you had a stroke or strokes the neurologists would have NOT put you only on aspirin for anticolgant therapy. Furthermore, having possible strokes and only one miscarriage doesn't mean you have APS".

    As I sat there ready to scream, I looked at him and replied, I understand what you are trying to say, yet having APS or not isn't the issue here. APS has already been confirmed ten years ago and again last week by my hematologist. He smerkes and said testing a weak positive doesn't confirm anything. That's not fr from normal....I said, well slurring speech and hitting walls isn't my norm either but it happened! He completely dismissed what I was saying and continued to not agree with my hemotologist starting me on Coumadin.. I so feel your pain!! The APS I can take but the ignorance I can't!!! My advice to you is the sme as to myself- find another doctor! <sigh>

    Best of luck and keep me posted :)

    Xx

  • Ps

    Lol I felt like telling my doctor "No really I'm making all this up! I want to be sick! I want to be on coumadin so I can't drink wine! Really-I enjoy spending my time and money to see people like you:) its a major goal that I've set for myself in life! I was so upset I thought I could spit on him! Haha! But tonight I looked up the criteria ONCE again and one clinical and one test qualifies for APS. So- I'm thinking about making him a copy and taking it by tomorrow. In all honesty, I'll say my prayers tonight and give him a copy soon. Keep going and have faith. Xx

  • I can understand the frustration everybody! It is bad enough being this ill, without being told it is perhaps not as real as it is, I completely understand! Mary F x

  • Hi everyone thanks for your replies, makes me feel so much better. Looking for another doctor seems to be the best way forward. I live in London, so will go back to my GP to see if I can be referred to St Thomas' or at least somewhere that knows more. Had scan on my leg today as have been in pain since surgery nearly a month ago, fortunately no DVT detected, so probably a nerve thing from the 3 operations.

    Thanks for sharing your experiences, you've all had much tougher time than I have. Good luck Sarah with your results - I agree with everything you say - if something isn't right though you need expert treatment not loads of guess work and excuses. Lots of love Alice x

  • Love back to you all. Alice, it sounds like you ate making a very wise choice by seeking another doctor's referral and from my understanding, St. Thomas is wonderful! Best of luck!

    Xx mommaleda

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