Autoimmune disease of the ear


Initial submission:

My name is Kelly. It has taken me 7 years and 28 Dr's to finally diagnose me with autoimmune disease of the ear.  I noticed that was not a name on your list of autoimmune diseases.  What it entails is severe vertigo, dizziness, vestibular issues, balance issues, loss of hearing, extreme pain in the ears and noise in my ears, Not just ringing or white noise but a banging noise that sounds like a speaker being blown out and banging in my head... sometimes all 3 at once.  I pass out with out a warning.  I trip and am covered in bruises.  I demanded a test called the anti 68 KD test which is a simple blood test, and every Doctor told me it would come back normal so why order it.  Well, it came back positive.  Although a relief to finally know what was wrong, unfortunately no one in my town knows really how to treat it.  It's very rare.  Now I am getting pain in my eye sockets, and visual changes all day.  Sometimes afraid to drive and no one can tell me if this is related to the ear issue or if I have more than one autoimmune disease.  My cognitive thinking is also getting worse, I forgot everything.  Even where I am.  Is this part of the disease or is there more going on.  Extreme fatigue, muscle aches an it all comes when my ears are really bad.  I have a phone consult with a house clinic in LA that I had to pay for myself to see if they can answer my questions, or even give me a second opinion on my treatment.   Anyone else out there with this disease?

Later submission:

I have lost all hearing in right ear and 10 more decibel's in left.  They took me off methotrexate, since all the studies show it does nothing,  My next visit is Salt Lake city to hopefully get a cochlear implant.  I should not have googled that.  Yuck!!! Started Low Dose  Naltexone.  We shall see.  I started a blog,  (editor’s note... now,) but will be changing it soon to make it easier for people to find.  I am also starting a support group here in Reno. We don't have one, so any advice would be awesome.

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