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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

Thank you Becky. Neither site has any information regarding Autoimmune Inner Ear Disease. Any other suggestions? I need to find a doctor to help me before it is too late for my hearing. I live in NC and will travel to get help.

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Replies to "Thank you Becky. Neither site has any information regarding Autoimmune Inner Ear Disease. Any other suggestions?..."
Becky, Volunteer Mentor | @becsbuddy | May 26 1:18pm

@needanswers7 I think you should call the 2 organizations, not just read the website. You could also ask for an ENT, (ear,nose,throat) specialist. This website may also help you.
https://www.enthealth.org/conditions/autoimmune-inner-ear-disease/#:~:text=A%20multidisciplinary%20team%20approach%20between,recommended%20to%20manage%20the%20condition.
I agree with @tinae about calling Mayo Clinic. At the bottom of this page, there is a ‘request appointment’ button to click on. This will take you to information. You might ask for appointment at Mayo Clinic Jacksonville since it is close.
This discussion may be helpful:
https://connect.mayoclinic.org/discussion/autoimmune-inner-ear-disease-1/

I know it’s difficult, but you just have to search. Call university medical centers and large, teaching hospitals in your area, but wait until Tuesday.

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christie125 | @christie125 | May 26 2:06pm

I would try Johns Hopkins. They refer to it as Immune Mediated Inner Ear Disease. I've not been to their facilities but I've heard really good things about their rheumatology department through the autoimmune community.

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