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

Autoimmune Diseases | Last Active: Oct 31 6:20am | Replies (228)
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@tinae

Hi - yes it is auto immune inner ear disease. Basically I am losing my hearing due to this disease. Originally it was thought to be something else, but once it went bilateral it wax diagnosed. Mostly middle aged women, very rare.

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Replies to "Hi - yes it is auto immune inner ear disease. Basically I am losing my hearing..."
needanswers7 | @needanswers7 | May 25 10:38am

Have you found help? I continue to lose hearing and tinnitus is loud 24/7. Neurotologist says AIED and go see Rheumatologist. Rheumatologist says “ I see no autoimmune problems, go to Neurotologist.” Neurologist did head/neck MRIs, MRV, CT and find all normal. All this started 6 years ago when I was 58. No one knows what to do. I need to find an expert in AIED fast. I can not understand people, TV, music even with hearing aids in. Did Prednisone and Methotrexate. Prednisone helped for 1 1/2 weeks then all gradually got worse. Saw no improvement with Methotrexate 12mg pills 1x week over 6 months. I’ll travel anywhere to find someone who can help me.

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