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

Discussion

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

Autoimmune Diseases | Last Active: Jun 25 3:06pm | Replies (217)
Comment receiving replies
@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.

Jump to this post

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.

VIEW AND REPLY