AIED/autoimmune inner ear disease:
Will anyone who has been diagnosed with a possible autoimmune deafness, please post a message for me on this site, or e-mail me on;
160luci@atlas.wits.ac.za
I'd liked to share information with you.
Thanks! Lucille S

My son was diagnosed with this last year. He is now 19, but lost his hearing at the age of 18 months when he had the chicken pox.

Hi! Thanks for your reply.I'm sorry to hear about your son's situation. It's not clear what happened-if he lost hearing due to illness as a baby, has he lost more hearing recently, & this time they think it's AIED? Please feel free to e-mail me if it's easier than using this site: 160luci@atlas.wits.ac.za
Thanks! Lucille

My son had hearing when he was born, but lost
it very suddenly when he had the chicken pox. His hearing remained about the same until about a year ago. He had a horrible event of vertigo and suddenly lost all of his hearing. It gradually came back, but not to the level that it had been. After going back and forth to the ear doctor he was referred to a specialist in inner ear disorders. He took some blood from my son and sent it off to a doctor who is studying autoimmune hearing loss for a test of some sort. The results showed that he did indeed have hearing loss associated with autoimmune disease. I know nothing about it. He has other problems, such as hair loss that I know can be associated. And, I'm having him tested for diabetes, which is also an autoimmune disorder. Not sure if they are all related.
Tell me about your situation.

Hi! I must apologise for not answering you sooner but I've been on leave for most of January & February without access to e-mail.Your son's case is sad-one comfort is that some of the hearing he lost after that sudden event, returned. As for it's being autoimmune: firstly, a virus can also cause sudden deafness. Re tests for AIED: there is no definitive tests, ie you can test negative & still have AIED. However, perhaps your son tested positive on one of the anti-cochlear antibody tests, eg HSP 70, Western Blot. The current treatment for AIED is steroids first & then Methotrexate (MTX) is introduced. The steroids may be phased out while the MTX, an immunosuppressive drug, is used in low doses. Low-dose MTX is used in other autoimmune diseases, eg psoriasis, rheumatoid arthritis. It's news to me that diabetes is autoimmune??
Also, I've never heard of hairloss associated with AIED, except as a consequence of taking MTX-one may lose a bit of hair for a while.As for my case: I lost half my hearing in my L ear in '78, at the age of 32-they think it was viral.I woke up dizzy, sounds were distorted That has been unchanged ever since. Then in mid-'97, I had 'flu, my R ear started buzzing, & started a slow progressive hearing loss. A year later they realised it might be AIED. Steroids don't seem to help me but I took MTX for a year in '99, & that stopped the slow decline, but didn't prevent a sudden drop in Nov '99, when I lost a lot of hearing in the R ear.I've been off MTX since Jan 2000, stable so far. If the doc thinks your son's case is autoimmune, what are they doing to treat it?? One tries to stabilise the hearing to prevent further loss if possible.Feel free to e-mail me if that's easier than this site. Anyone else with suspected AIED is welcome to write here/e-mail me.
Lucille S 160Luci@atlas.wits.ac.za