What should I do ?

Good morning...I am looking for some advice please. I was diagnosed with PAPS in 1998 after three recurrent miscarriages, also polycystic ovaries and was told that this is also Hughes syndrome. Over the years I have noticed symptoms such as dizziness, almost blacking out, aware of my pulse in my hearing. My memory is worrying me as I forget a lot of things that I don't think I should. A horrendous headache at the base of my skull that lasted for months and I could not bend down. A lot of heart palpitations/fluttering and feeling that I could collapse when it is happening..legs going numb at the same time. Should I be medicated for the Hughes syndrome ?....Many Thanks in advance :)

7 Replies

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  • Hi and welcome, firstly where are you located. If you have had a diagnosis for Hughes Syndrome/APS you need some regular care for this. Also it is not unusual to have Thyroid issues with this, and I note your Polycystic Ovary Syndrome which is of course another endocrine issue. We have a list of specialists in the UK, so your GP could refer you, if not in the UK, I/we will endeavour to help further. MaryF

  • Hi Mary, thanks for your reply. I was diagnosed with Primary Antiphospholpid Antibody syndrome due to the miscarriages and was told at the time that it was PAPS as I was not having symptoms outside of the pregnancies. I am in Colchester in Essex.

  • Hughes Syndrome/APS can change over time. You very clearly need help now. Please get your GP to refer you: hughes-syndrome.org/self-he...

    Also have a look at the entire charity webiste when you have a mo: hughes-syndrome.org/

    A lot of people end up going to St Thomas' Hospital. If there is a failure to refer some go privately to the London Lupus Centre, having done their blood tests locally. Come back to me/us if a problem.

    MaryF

  • Thanks very much. I will go to my GP. I had three successfully pregnancies under St Marys care in London. I am interested in possible connection to Asperger syndrome also as I believe my son is on the spectrum. I also had to have an ovary removed in an emergency operation as their was a massive cyst. Thanks...looks like I should be following this more closely. :)

  • If your GP is redoing blood tests, then as well as the ones listed below, get a Thyroid panel done, also you levels of D, B and Iron looked at. The test need to be done either early in the morning so they don't hang around for collection or do them at the hospital. hughes-syndrome.org/about-h...

    Let us know how you get on. MaryF

  • First of all, wellcome to this friendly site.

    I totally agree with the very good information you have got from MaryF.

    I wish you good luck and please stay on here. We have a lot of helpful members.

    Best wishes from Kerstin in Stockholm

  • Hello and welcome

    I completely agree with what my colleague Mary has advised you and what my colleague Kerstin has said too.

    You need to be seen by a consultant who is knowledgeable about APS as you may need anticoagulation medication to protect you and to deal with the symptoms that you describe.

    Best wishes.

    Dave

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