Is it worth asking our GP to test our daughter for Hughes syndrome (aka anti-phospholipid syndrome)?

I have SLE, Sjögren's and Hughes syndrome and mild Raynauds syndrome. My mother had multiple sclerosis and our son has palindromic rheumatism. Think you could say that our family has had its fair share of auto-immune diseases!

Our 21 year old daughter has recently been getting increasingly severe migraines, the most recent one causing problems with her vision and difficulty speaking. She also said she had tingling and numbness in her fingers on both sides. I suspected a possible TIA but our locum GP just said it was a migraine. Is it worth asking for her to be tested for anti-phospholipid syndrome and in the UK, can a GP request this test or would she have to be referred to a consultant?

Many thanks for any help/advice you can give.

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  • Hi there in view of your family problems and the clear symptoms your daughter is exhibiting, yes you need to get her tested and referred. Here are the tests that he/she needs to do, and also the list of specialists to refer to, it should be somebody off the list otherwise the expertise and knowledge will not be up to date.

    1. hughes-syndrome.org/about-h...

    2. hughes-syndrome.org/self-he...

    If the GP fails to listen to you, you may have to self refer privately. I do suggest you send by email to the GP surgery a clear and short email addressed for the attention of the GP including the charity website, mark the above two links for their attention, and of course the symptoms!

    3. hughes-syndrome.org/about-h...

    MaryF

  • Hi Mary,

    Many thanks for your reply. Will do as you suggest. Pity there are so few "experts"! Xxx

  • Hopefully this will change over time, the charity helps with this, and also patient's taking the trouble to tell the charity that they have found somebody who knows with detail the manifestations of the condition, if the data base grows in size with more listed medical experts this will help. Also the many on here who do not draw a wage from doing this, but continue to work hard to help, simply due to wanting to help. Paid up members to the charity of course also bring in revenue to help bring those funds in to help with publicity. Hope it works out with the tests, let us know how it goes. MaryF

  • Hi.

    Your daughter is showing the kind of symptoms that I had before I was diagnosed.

    I agree with the advice that my colleague Mary has given you.

    Dave

  • Hi Dave,

    Many thanks for your reply. Appointment is now booked for our daughter to see her GP! Xxx

  • Hi Salty

    Sorry to be pedantic...... I don't think we should be advising re medication

    Otherwise I second everything that has been said.

  • Hi salty

    At 18 year's old I started experiencing the kind of headaches your are describing, I had lots of other - I thought unrelated - problems, I'm 39 now and and after suffering 2 simultaneous clots in November I've since been diagnosed with APS - think it best to have your daughter to have tests done

  • Hi London -Lass & Salty

    Yes, I agree and without wishing to sound a nag we mustn't advise on medication on here.

    Keep up the go work posting on here and spreading the word.

    Best wishes.

    Dave xx

  • Hi, yes please get ur daughter tested ASAP. I has stroke 4 years ago, and a TIA in September of last year. I was admitted to hospital after the last incident, and the consultant there told me it was a migraine. I have been having migraines from the age of 12 so I knew myself it wasn't. Lucky I was still under the care of a neurologist from my first stroke, who told me to disregard what the other doctor had said. I was admitted to hospital and after years of running I have been diagnosed as having sneddons syndrome and Sjögren's syndrome. So please get ur daughter tested as these conditions are genetic.

  • She is 21 and an adult.

    What does she want to do?

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