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DiscussionAnyone out there with Autoimmune inner ear disease (AIED)?
Autoimmune Diseases | Last Active: Oct 31 6:20am | Replies (228)Comment receiving replies
Replies to "My empathy and reply to all of you. I have had hearing loss since the 1980s,..."
May I ask what kind of heating aids you have. I’m the one that made that comment. I have an Phonak and they were extremely expensive but they don’t help with clarity. I can turn down the volume up or down I can adjust for background noise are having a listen to the people in front of me but definitely not clarity, so I’m curious what you have maybe I can give them a try
My eyes are involved too. It’s so hard to get doctors to understand. I agree you have to do research on your own. I just feel like researching my health is all I do and that can get depressing!
Did you go to Chiropractic for pinched nerve. Were you in pain?
I see this is an older post but I would like to hear more because your symptoms sound like mine.
Most people don’t mention their eyes.
Good info! Is a pinched nerve the cause? Did chiropractor help? Have you tried acupuncture? Before Covid, I had the flu with right sinus congestion and right ear stopped up. Took antibiotic and Flonase and Zyrtec trying to clear ear with no success. Terrible crick in my neck for 3 months. Sudden hearing loss in right ear with tinnitus and dizziness. ENT said Meniere’s Disease. A year later the hearing loss started in left ear, now think AIED. I’ve always wondered if a pinched nerve is to blame but no one will listen. Numbness in fingers in both hands started about the same time. Now numbness in toes on both feet. Healthy , happy person. All rheumatology tests are normal with no concern with inflammation markers. I can’t find a ENT or Rheumatologist with AIED experience.
Thank you for sharing Greg that is a lot of information. I think most of us are trying to read as much as we can, and figure out what to do but like you stated some of it’s debilitating and you just don’t know what to do.