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Meniere's anyone?


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#1 aka79

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Posted 29 August 2009 - 08:23 AM

Hello all,
My beautiful sister who is 25 years old has been dealing with lupus since age 18. Although she almos lost kidney function when she was 19, she recovered a few months later after starting Cellcept. She's been doing fine and in remission while on Cellcept for the past 5 years with 100% normal life. About a week ago she started feeling dizzy with bad nausea 24/7. More tests are needed, but Doctors think it is Meniere's (which I understand as a chronic inflammation of the inner ear), just another chronic condition that she will have to deal with... This seems to be pretty disabling as she can't drive or work since the vertigo is so bad. Anyone here has this? What can we expect with this condition? I wonder what the connection is with autoimmune diseases..

Thanks for sharing your experiences!

#2 Amanda Thorpe

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Posted 30 August 2009 - 07:08 AM

Hello Ana

It's great to hear from you although I am sorry it's because your sister is having problems. I have a twin and she also has an autoimmune disease which is actually more rare than sclero!

We have a page on Meniere's including patient stories which may be helpful to you.

I hope your sister's symptoms improve and that things are well with you.

Take care.
Amanda Thorpe
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#3 summer

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Posted 30 August 2009 - 06:53 PM

Hi Aka,

I had an attack of Menieres going back maybe 13 years ago, it is very disabling. With me, I was walking home from the shops, arrived at home, noticed a slight ringing in my ears, all of a sudden the dizziness came. It was so severe, I couldn't stand up or even sit up, if felt like like my eyes were rolling back in my head so fast. The nausea was very bad as well, my husband wasn't at home at the time, so I managed to drag/crawl myself to my neighbours , and she drove me to the hospital. I was in the waiting room in the ER for so long on a stretcher, they gave me an injection of anti-nausea drug, and was told it was menieres. It took me nearly a month to recover, the dizziness lasted approx 10 hours, but the fatigue was terrible. I could hardly walk to the bathroom, because of the fatigue. Thank goodness I have never had another attack, it was the worst thing ever.

I was diagnosed with Limited/cRest Scleroderma approx 2 years ago.

Kind regards
Summer