Question re diagnosis

[jasperc163]

Hi, Mary kindly told me about this group. I have no idea if I have Hughes but am keen to get it checked out in case it explains my 2 yr + constant headache and migraines, joint /muscle pain, dizziness/vertigo, poor circulation with feet that often go purple, tingling/numbness in hands, brain fog, fatigue.

I have not had either a clot or miscarriage (can you acquire this at any point ie post pregnancy?). But have a family history that might be relevant with my mother having suffered migraines followed by a brain haemorrhage in late 40s and a stroke early 50s. Her headaches appear resolved since she was put on blood thinners. She is also hypothyroid (I am borderline but non responsive to mess).

Anyway I going to try to see if neuro will test me but I am concerned that some sites say you need to have had a clot or miscarriage , as well as antibodies, to be positive ?

Thanks a lot

Jasper

[MaryF Administrator]

Hi there, (again), any GP or consultant will be happy to run these tests: hughes-syndrome.org/about-h... Some patients who have not had a clot, do very well on just Aspirin, other need an actual anticoagulant. This condition does run in some families it certainly does in mine. It is also not uncommon to have a Thyroid problem and also Sjogrens Disease. It has taken me years to pass the tests, but most do so. It is important to do all three tests. MaryF

[jasperc163 in reply to MaryF]

Thanks Mary. Not holding out much hope re the neurologist's response!

A lot of people on here seem to still have headaches so I guess it's not as straightforward as just treating with aspirin or warfarin etc?

[MaryF Administrator in reply to jasperc163]

Actually people do often find that their headaches to a large degree disappear once the sticky blood is helped! Headaches from Hughes Syndrome/APS often do not respond to pain relief but do to the Aspirin and or anticoagulation. There should be no reason whatsoever why your neurologist would not test you with your family history, if not get your GP to do it, and take the forms to hospital blood test centre. You certainly need some help. MaryF

[MaryF Administrator in reply to jasperc163]

telegraph.co.uk/news/health...

youtube.com/watch?v=V3J8BLk...(Not working as expected?)

ps I have never had a miscarriage due to having anticoagulation with each pregnancy due to clots, but have had many other symptoms and still do.

MaryF

[jasperc163]

Thank you so much Mary. I will see how I get on. If desperate then I see the Medicheck link on the website? Has anyone used them?

I am just wondering if 2 healthy pregnancies without aspirin are likely to discount it. Can it develop at any time ?

[MaryF Administrator in reply to jasperc163]

If you can't get the help you need, some people self refer to London Bridge, The London Lupus Centre, but as a suggestion take your NHS test results with you as the test are costly otherwise... it is still a private appointment. No I have not used Medicheck. There really is no reason whatsoever why your GP or Neurologist would not do these tests, they are cheap to do. If you are feeling up against it, choose your most articulate, neighbour, friend, relative as your advocate and firmly insist on it explaining that it is important and that if they will not assist you in such common sense tests and investigations it may be fall on them should you have some sort of medical incident. MaryF

[jasperc163 in reply to MaryF]

Hi Mary,

Well appt much as expected ie drug and Botox options. She said she thought Hughes not relevant but did agree to do blood test. So a couple of weeks I think til I get result.

Thanks again