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
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