Blood condition??

Well, the latest round of tests are back and I don't have Hughes syndrome. (Thanks for the tip on that one!) However I have tested positive for Lupus Anticoagulants, which is a complete misnomer as it's not an anticoagulant disorder at all rather it's a hyper-coagulant disorder. But unlikely to have any effect on the constant head pain that has not stopped once for 18 months now.

Botox injections start next week, and whilst I'm hesitant about putting what amounts to poison in my head/face my mood is getting so low that I will do just about anything at this point to have a chance at making the pain stop.

Haematology appointments now join the ever-lengthening list of places I need to be, and to be completely honest, I'm too tired to keep fighting this. It's getting harder and harder and I'm tired.

10 Replies

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  • Hi Lupus Anticoagulants test is a badly named old fashioned name for a Hughes Syndrome Test, unless your consultant is in the know they may not understand that.

    Here are the tests plus a paragraph about the badly named test, hughes-syndrome.org/about-h...

    Also here are our suggested specialists: hughes-syndrome.org/self-he...

    You need a doctor who fully understands this condition not half understands it.

    Please note there is a forum on this HU platform for this charity, you can be on that one as well as this one. MaryF

  • Mi went for blood tests last week and asked the doc if I could be tested for HU. He had never heard of it. I will be going back to a different doc now

  • Please look at the list of recommended specialists, if you are being messed around, take your most articulate friend, relative, neighbour or work colleague with you, to the GP and insist on a referral to one of them.

    Where are you located?

    The tests listed above are time sensitive, so not a good idea for samples to be left hanging around for collection in a GP surgery, you can take the forms to your nearest hospital. This condition is unstable but if properly managed is much better. Also your D, B12 iron and your Thyroid needs to be checked. Hughes Syndrome is also known as Antiphospholipid Syndrome or Sticky Blood it is crucial that you get help. Please do read through the symptoms and do not be afraid to write to your GP on email, marked for their attention on secretary's email address enclosing the links. If you have any medical insurance, which most do not, you can self refer to London Bridge/London Lupus Centre. Please stay on this forum as well as ours HSF, which I administrate. MaryF

  • I also enclose a film featuring Professor Hughes himself:

    MaryF

  • Thank you for your help x

  • No problem your case is not unusual, Hughes Syndrome/APS has recently been debated in the House of Lords due to the situation regarding lack of diagnosis and lack of understanding from the medical community including GP's. Hughes Syndrome Foundation Forum will help you. MaryF

  • I'm located near Liverpool and see there is a specialist in the Liverpool royal

  • I understand the being tired. Daily headaches are exhausting just keep going to the appointments. im hoping they will find something to help you.

  • I agree with Mary.

    The lupus anticuagulant test is one of the markers for Hughes/aps

    Prior to diagnosis I had regular migraines that then progressed into hemiplegic migraines.

    After being diagnosed and put on warfarin my headaches and migraines stopped almost immediately. I can get the occasional one now if my INR goes down.

    It's really important that you read up on this condition and be referred to an APS specialist.

    I hope you can get some relief soon.

  • Thanks for all your replies. I'm doing my best to keep the faith, just gets difficult from time to time.

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