Anyone else been diagnosed with Menie... - Hughes Syndrome -...

Hughes Syndrome - APS Support
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Anyone else been diagnosed with Meniere's disease?

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I suppose what I'm really asking is if any of you have ever been suspected of having Meniere's disease when the problem was actually caused by antiphospholipid antibodies or auto immune disease of the inner ear?

I have also read that both hypo and hyper thyroidism can be mistaken for Meniere's disease as can CNS issues such as dysautonomia.

I'd be very interested to hear what testing was undertaken to establish the true cause of the problem.

Thanks,

H.

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Thank you for the link- I'll have a good read through the posts to try and get a bit more information.

As ever, not sure what I'd do without the great info and back up from you all on this site!

Hxx.

I was diagnosed with it 20 or so years ago but not APLS until about 10 years ago. But I suspect it was just one of my initial symptoms.

I had fully flown spinning, balance issues, noises in the ears and kept falling over, legs would just give way. Had an MRI and all sorts of tests but they couldn't find anything. Went on a low salt diet for a few years and that seemed to help for a while.

My granny has a menieres diagnosis, a b12 deficiency, under active thyroid and Tia's- I suspect that she has hughes- as I suspect I do as well as my children.

Hi, Like yourself i have auto immune disease sticky blood, ear problems, the list is endless.

I was under the ear, nose & throat dept for some time with what they thought was meniers but it was later put down to Fibro Myalgia ! The ear at times feels inflamed with a warm sensation, the pain if i have to put drops in is horrendous.

It is like a constant pressure in the ear that sends my head all off balance & swimmy.

The ENT consultant on examination found i had water behind the ear drum ! He used a machine to such the water out what ever he touched i dont know but i shall never forget the pain i swear he ruptured my eardrum.

I also suffer with tinnitus & balance problems that can make me feel very sick to my stomach.

At the moment i am seeing a consultant in Oxford for my genetic immune problems, the testing is endless.

I was put on asprin for my sticky blood but due to problems & inflamation to my gut i was taken off them but nobody has checked my blood since.

I dont know what is going on with us all on this site all i know is it has been a long never ending journey trying to find out.

We all seem to have a lot in common yet going down different pathsto find our answers.

For the record my Son & I have Genetic Hypoparathyroidism, I also have Hypothyroidism, Fibro Myalgia, Arthritis, Diverticulitis, IBS.

Things being looked at as secondary illness are Cushings, Di-George, Addisons, Sjogrens, & Lupus i have had two positive boarder line results of Lupus.

Not all consultants have been sympathetic to my case but i have battled on & am now getting the testing that is needed.

All i can say is be patient my friends it is not easy to diagnose people like us & the blood work can take months to get results. My thoughts are with you all.

May i ask what the other possibility was ? I agree the Drs, Consultants need to confer with each other then they would have a clearer picture......but no that is to easy.

Instead your body parts are scattered around different departments each specialist looking at there own field.

It is sad when you read the stories from other patients to find most have been pushed from clinic to clinic with very few answers.

I have lost count of how many consulting rooms i have come out of in floods of tears.....not any more i am fighting back not for myself but for others and my son.

All i can say is read, learn about your illness, look for other illnesses that are linked.....ask questions when in the consulting room....ask for tests to rule other illnesses out.

Due to my Hypoparathyroidism my consultant was quite happy to take a back seat and just do a blood test every six months.....i had to give him a wake up call to get the relavant testing done......lets face it we are not talking about a boil on the bum here....we are talking serious health issues.

The humiliation i have endured over the years has been painful to say the least....i am 62 this year and not asking for a miracle cure just a little relief to help me through my day.

All they seem to want to push you out the door with these days is antideppressants....i have cronic lethargy why would i want to take pills that make me even more of a zombie ?

I have asked my consultant to take a look at some of the chat sites on the net so he can get an insight on what the patients are going through.

Sorry to let off a bit of steam but these people are getting paid megger bucks, the technology is out there so why are they not using it.....The answer is simple it is all down to cost !!!! Grrrrr it makes me angry.

Thank you all for your replies :-)

Your messages make me even more sure that further testing is needed to work out if this actually is Meniere's disease or symptoms of APS.

Trying now to chase it up with the consultant and the GP.

Hxx.

patient.co.uk/doctor/Menier...

Here it is said that antiphospholipid antibodies are possible risk factor to Ménière's disease.

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