APS Diagnosis

Hi, I was finally diagnosed with Hughes Syndrome 16 years ago after 15 miscarriages. My daughter who is now 27 is experiencing a lot of classic symptoms like migraines, pins and needles, mild anaemia, visual disturbances, fatigue and foggy brain. But also has problems with her bowels and bladder amongst other things.

I have spoken to Professor Hughes and he suggested trying a low dose aspirin which she has and made no difference.

The GP has tested her twice for APS which has returned negative so he won't refer her onto a specialist. She is in a long term relationship and is getting quite anxious about trying for a family.

Can anyone suggest what we should do next.

3 Replies

  • HI there, with her symptoms and your history the best way to go about this, is to self refer privately to The London Lupus Centre, however be firm with your GP about re doing all the test one more time, I load these up below. Also get them to run the tests for Iron, B and D, plus a full Thyroid panel, do the tests at the local hospital as if the samples hang around in a GP surgery it can affect the results as they are a bit time sensitive. Going to London Bridge is of course something you fund yourself, but as a one off taking the tests with you would save some money, and also probably get her NHS care on track. It is possible to be sero negative for Hughes Syndrome/APS whih I have been for decades util recently when I passed two tests including the one for Antibodies, the same also for Lupus in my case.

    It is likely that you would then get local support, you can make it clear at the appointment her worries and that there is no specialist support!



  • Most if not all autoimmune diseases can be inherited. I would keep insisting on her being tested. She may not be testing positive yet. It's possible for antibody test to be both false positive as well as false negative. I hope it wont be needed for her to have a clot before anything is done.

  • I don't need to say anymore as Mary has already said everything I would have advised. Unfortunately you will just have to become her own advocate. Being sero-negative will be an uphill battle especially when she comes to getting pregnant however if you do go down the LBH route she could get under the care of Prof Khamashta (PH side kick) after dx who is the specialist with pregnancy and he hopefully would transfer you to his NHS clinic at Guys.

    Hang in there.

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