Sticky Blood-Hughes Syndrome Support

Menieres and Hughes Syndrome

Got chronically ill 2012 after a Norovirus infection. GP not interested. Family history of Ménière's disease. GP not interested. Eventually saw top ENT specialist here. Lots of tests. I'm classic Ménière's.

I think I've got sticky blood - Hughes Syndrome. Again GP not interested.

I've been taking a low dose aspirin (75mg, self prescribed) daily for a few months now. Ménière's episodes and spiking blood pressure getting less frequent.

Would appreciate info re: your experiences and feedback

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HI there, the fact that the Aspirin is helping may be a clue Please do look over on the right hand side of the forum under pinned posts, as you will find our recommended specialists across the UK, which will help not just you, but also your GP.

It is not unusual for other family members past and present to have a history of migraines, autoimmune disease including Thyroid issues, or heart attacks and strokes at an early age and if female, miscarriages and stillbirths.. Let us know how we can help.

The three blood tests required are these, and best done at the hospital due to the sensitive nature of the samples taken, timing wise.

Anticardiolipin antibodies (aCL)

Lupus anticoagulant (LA)

Anti-beta2-glycoprotein-1 (anti-B2GP1)

Also if you do get tested, please make sure they look at your Thyroid function, also B12, D and Iron, best of luck.

MaryF

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I'd find a new GP as clearly his lack of interest isn't a one off. Have you asked for tests and referrals I'm guessing your GP referred you to ENT or did you find another way to see them?

As Mary says get the blood tests done and take it from there.

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Hi Tucson. GP is a she. I know, go figure. Yes I did ask for tests and referrals. GP ignored request for Hughes Syndrome test - it's just a blood test for goodness sake. Referred me to local ENT clinic. Still waiting for appt. Meanwhile I went privately to top ENT specialist here - therefore the 'classic' Ménière's diagnosis after loads of tests. I think Ménière's and Hughes Syndrome connected. What do you think?

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I think quite a few people have had a problem with GP's making all sorts of excuses as to why they can't do the Antiphospholipid tests. I didn't even know they were testing me for it, they were looking for clues after my stroke and just presented me with it a year after the stroke.

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Thank you so much MaryF. You've given me clues and avenues. All I want to do is get well again

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Hi Barbara7 There is evidence that Menieres and Hughes can go together and we have had people on here with both. You say you saw a top ENT Doc here - where is here? There is a very good Dr at the Portland Hospital a Dr Peter Savundra theportlandhospital.com/med...

He's a lovely man and he knows a lot about APS and how it affects the ears and conditions such as Menieres. I called his secretary once and he called me back personally and I never had to go and see him!

Perhaps once you have an official diagnosis your GP will take more notice. If not well then you have no choice but to find another as that behaviour is not acceptable. With the correct medication there is no reason why you should not be able to get this all under control.

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