View Full Version : Meniere's Disease, Anyone?

07-13-2003, 09:56 PM
Hey...I have SLE, arthritis, Raynaud's, Sjogren's....and Meniere's Disease.

I have yet to find another Lupie with this disease....Does anyone else have it?

According to the internet, it usually presents between the ages of 30 and 50, and in the presence of another autoimmune disease. Yet, I can't find another person with it. While I am relieved for my Lupie friends, I am puzzled.

Thanks for your time .

07-17-2003, 07:45 PM
I never finished up with doctor due to loss of insurance. But my fingers turn quite blue sometimes. They were working on a diagnois (a new doctor) after 5 years being misdaignosed with tests for everything but the right thing, some of the tests I have had were , lyme disease, gout ,hepitits, parvovirus,strep, cytomeglovirus, mono and a whole host of others (5 years of this). The new doctor zeroed right in on rheumatoid arthritis and lupus , the test for lupus was not conclusive , but he wanted to do another - he felt strongly that was on the list due to severe skin rashes after sun exposureand Rheumatoid test was positive - 226.He told me it was possible a common for one autoimmune disease to overlap another

07-19-2003, 08:26 PM

Treat Raynaud's attacks as you would frostbite....use warm water/luke warm water running on the affected areas. The primary goal is to prevent flares. I keep a coat with me in my car, and take it in restaurants, etc. I also ordered some glove liners through wintersilk.com Sometimes I wear them under food handle'rs glove when I am preparing cold chicken, etc. And I wear them all winter long! It is important to prevent the flares, can't emphasize that enough.

If you smoke, quit. I have been told not to deice my car, or my freezer. I met another lady who has Raynaud's who uses oven mitts when she reaches in her freezer.

Usully after an attack some to extreme pain begins in the affected areas, as blood returns to the areas.

Until you can see a doctor to follow up, I would advise searching the internet to read what other precautions you may need/want to do.

Good Luck.

10-29-2003, 08:42 PM
Hi Jen

I was dx with sle only a few weeks ago but during the last couple of years I have had severe attacks which left me unable to walk without falling over and being extremely nauseous. The doctors referred to this as menierres syndrome. My father had menierres
and suffered quite badly with it. These attacks seem to be really bad for a couple of days and then I am still left with the feeling of my head being a few seconds behind my body (if that makes any sense) for quite a few weeks after the initial attack.

I have never had this properly investigated as the GP referred to it as a "bloody nuisance" and just said "its just another of those things you gals have to put up with" needless to say I am now seeing another doctor.

The rheumy I am seeing is a wonderful caring man and he has brought back my confidence in myself. I now know that all these strange things that had been happening to me were for a reason and he is determined to help me overcome them.

So, I am taking my meds and looking after myself and even though I havent seen much improvement yet (I was told it may take a while) I have a much more positive outlook and am enjoying life to the best of my abilities.

Hoping this finds you happy (if not well)