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

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@becsbuddy

@tinae Yes, it is very rare, maybe 15 out of 100,000! You must have seen all the right doctors in order to get a diagnosis.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6213300/
I’m also giving you the link to our hearing loss group because there are currently no discussions about AIED in this group. You can look through the discussions and find an appropriate one for you. You can also re-ask your question there:
https://connect.mayoclinic.org/group/hearing-loss/
Have the doctors made any suggestions for treatment?

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Replies to "@tinae Yes, it is very rare, maybe 15 out of 100,000! You must have seen all..."

I read the ncbi-article. I’m interested because I have bilateral sensio hearing loss that is progressing. Had first h/a 2012, then 2 more since then hoping to hear people talking, not background noise. My audiologist has no suggestions. I do have a personal & family history of autoimmune diseases. I have Autoimmune ITP x4 episodes, Hashimoto hypothyroid & CKD no known cause (I wanted a Bx to see if lupus, but nephrologist says it’s to hard to get to the kidney behind ribs). My sister has lymphocytic colitis & her dtr has systemic LE. My brother had DM1 at age 30, thought to be possible immune (he passed in 2020). All 3 of us are HOH. Ithink I have stand-alone psoriatic arthritis (have enthesis feet joints, heel bone spur, 2 knee replacements, verticals ridges fingernails, and chronic back pain,stiffness); but RA Dr says it’s OA. My dad had psoriasis scalp in his 80’s with ankylosing spondylitis, OA. With all this immune stuff going on, this site makes me wonder if it also affects my progressive hearing loss? Maybe ask my PCP for Mayo referral to hearing clinic or RA clinic? My maternal gm had hearing loss prior to her death in her 50’s. My dad had hearing loss too, was in loud WWII tho. I read that autoimmune such as PsA & now this hearing issue can be hard to diagnose.