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Anyone out there with Autoimmune inner ear disease (AIED)?

Autoimmune Diseases | Last Active: Jun 25 3:06pm | Replies (217)
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@needanswers7

I’ve been told there is no diagnostic test for AIED. Please tell me the name of the test and the medicine your doctor prescribed for sudden hearing loss/tinnitus episodes that occur over the weekend. Thanks!

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Replies to "I’ve been told there is no diagnostic test for AIED. Please tell me the name of..."
kstar077 | @kstar077 | Feb 20 8:21am

I have had tinnitus since 2004. Been to every doctor. I take diamox and am looking into hearing aides for hearing loss. Nothing seems to get rid of ringing.

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poc1115 | @poc1115 | Feb 20 12:50pm

My rhematologist ordered a lab test and I think it was called Heat Shock Protein (HSP-70). It came back as a positive so we made the assumption that I had AIED. The after hours medication was predisone I think. Honestly it's been so long that I can't be 100% certain on that. This was per a neuro-otology MD I saw. He confirmed there was nothing I could do re: the tinnitus, and the AIED usually comes on suddenly that it was important to act quickly to keep it from crashing so to speak so that's why he recommended something to take after hours. I never had to use that prescription.

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