Any suggestions for how to prepare fo... - Hughes Syndrome -...

Hughes Syndrome - APS Support

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Any suggestions for how to prepare for first appointment with haematologist?

aliceblue profile image

Hi, I've been lurking for a week, and so glad I've found this site.

I had one test after my first late miscarriage and they treated me as if I have APS, too late for second baby, but 3rd baby had full APS protocols - even pre-birth and she is now 7! I've had migraines - including visual disturbances since puberty, pins and needles and numbness in my hands for about 15 years. Had no follow-up after I had my daughter, apart from Consultant Obstetrician putting me on heparin for a further month, and thought nothing of it.

I always have mentioned it to any health provider, including oncologists when I had breast cancer 3 years ago. Just got out of hospital after major breast reconstruction, and they didn't take into consideration that I have/may have APS (but I did tell them). Blood and veins didn't run and work how they should do, and had to go back in for 2 emergency ops as well as the 8 hour main op, had 2 transfusions and ended up in intensive care.

Consultant sought advice of haematologist during first op and have been on 60mg clexane since and for another 2 weeks. Went to see GP this week, he didnt know anything about APS apologised and said a lesson learnt etc, and doing an urgent referral.

Interesting to see so many comments about brain fog, I put it down to the harsh chemo regime, but there are things I can't remember that I used to - such as surnames, don't feel able to do presentations - very difficult at work! Might all be a big coincidence, but very keen I get to the bottom of this. I hopefully will have an urgent appointment to see a haematologist - any tips for preparation or questions to ask? Apologies for the long rambling post. Grateful for any help, thanks Alice.

5 Replies
MaryF profile image

Hi there,

Good luck with this, pleased for you. So, write out your entire history of your and offspring/events in chronological order, (bullet points is fine), it will act as a guide for the appointment and help you elaborate on specific points. Also any old letters or test results, etc. I always write stuff out for new appointments, helps me get more out of them, as once there I normally forget everything. Mary F x

Hi, so sorry to hear how you wern't oproperly diagnosed in the beginning It should have been confronted before now by the medical profession? Gggrrrrr don't get me started again!!!

I am glad you found us on here & you are being treated now & looked at tho' :)

You need to write everything down you have experienced, symptoms, ops, complications everything.....

Hopefully then you will have the correct medication & treatment needed.

Let us know how you get on x

Thanks Mary F and Suzypawz, I'll definitely do that, it's easy for me to miss things. Thanks for a quick reply, will let you know how I get on. Alice x

As one brain fog sufferer to another -- write your history sooner, then you'll have all that intervening time to remember and insert the stuff you forgot.


Hi everyone thanks for your help - I was well armed when I saw haematologist today - prepared well. 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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