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Anyone out there with Autoimmune inner ear disease (AIED)?
Autoimmune Diseases | Last Active: Jun 25 3:06pm | Replies (217)Comment receiving replies
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.
Replies to "Have you found help? I continue to lose hearing and tinnitus is loud 24/7. Neurotologist says..."
Have u tried a major teaching hospital?
Like you I had all the testing had prednisone nothing helped initially. I’ve been suffering for over 20!years mostly with flare ups as I seem to have it under control. Low sodium low sugar. I take lipoflavanoid. Works very well. I also take vitamins c and d my regime works. Lipoflavanoid can be found at Walmart if not on the shelf ask them to order it. Was recommended to me by my Ent doctor
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@needanswers7 So many others feel the same as you!
https://rarediseases.info.nih.gov/
https://rarediseases.org/
These 2 organizations are dedicated to autoimmune diseases and try to keep a list of doctors who specialize in rare diseases. Give them a call on Tuesday and see if they can help. I also have an informative article on tinnitus.
https://www.uchealth.org/today/how-long-does-tinnitus-last-do-hearing-aids-help/?
Please stay in touch and let me know what you learn!