I don't have this, but I am well aware of it. I have mild sensorineural hearing loss caused by lupus diagnosed by my ENT and audiologist. I have to get my hearing checked yearly to see how much damage the inflammation the lupus has caused the nerves. Originally, they thought it might be Meniere's. Just know, you aren't alone. There are some great articles on AID.

I knew the acronym looked wrong... it is called Autoimmune Inner Ear Disease. AIED. If you tried looking it up had difficulty, that is the actual medical name of the disease. Sorry about mistyping it before. I was having a little brain fog the other day.

You're very welcome! I know what it feels like to feel like you are going out there alone and you get to be one of those extra special people with a rare disorder, which means it takes forever to figure out what is going on. And for me, the hearing is still in the coming and going phase, but my poor girlfriend gets so tired of repeating herself... so this is pretty much what I tell everyone, "If I can't see your mouth, I can't hear you." ;)

Also, FYI they make special hearing aides just for these types of issues. My insurance sucks so I was told to wrap a heating pad around my ears, but your hearing loss sounds more significant so you shouldn't have any problems if you need them. Good luck with everything!

Thank you SO much. I needed to hear this (pardon the pun). My rheumy is also organising tests for damage. Am glad someone else has heard of it.

Could be inflamation ibuprofen may help check with doctor