Connect
← 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
How were you diagnosed with AIED? What test were done ?? I loss my hearing on April of 2021, directly after doctors performed ear wax removal with a suction device. I had this done once a year for the past 20 years with no issue, but somehow after this last cleaning it effected my hearing. Doctor mentioned the possibility of inflammation in the inner ear.
To date I have lost approximately 40% of my hearing in that one ear . I recently started with sporadic tinnitus in that one ear .
I went to see a Rheumatologist that tested me for autoimmune disease but test were normal range. Are test for AIED the same as other autoimmune diseases? Is it possible to be seronegative and have AEID?
Replies to "How were you diagnosed with AIED? What test were done ?? I loss my hearing on..."
Thank you for your response!!!
I was actually inquiring for a friend. I told her about this site but she didn’t want to go on here, so she sent me the write up and asked me to post it on her behalf. 🤷♀️ I shared your comments with her.
So far nothing has changed, at least it doesn’t seem to be progressing.
Connect
Hello I’m sorry to hear what you’re going through very strange that getting your ears cleaned after 20 years would suddenly cause you to lose your hearing in one ear. AIED it’s very hard to diagnose. Let me explain what happened to me first last July I woke up in the morning with both ears plugged thought it was odd so I had called the doctor thankfully got in they basically put me on prednisone hearing came back couple months later same situation kept getting progressively worse till I had a complete blockage on one side. Initially they diagnosed me with Ménière’s disease, but once it affected both ears, the audiologist determined it was more than likely. AIED, which is a very rare auto immune disease that affects mostly middle aged women. I’ve been on prednisone methotrexate and Humira trying to reduce the inflammation so I don’t lose my hearing completely at this point. It’s OK but it’s going to get progressively worse. During all this with all the blood tests and everything my NRA was a 1.5 which is nothing anybody at my age which is 57 can have a low number. I have a friend who is at a 3.5 and does not have an auto immune disease, so yes, you can have an auto immune disease even though your blood doesn’t show you have one. Seems like getting your ears cleaned after all that time caused the problem which is strange. I have other friends and get their ears cleaned and have for years with no issue. The Tinnitus is a result of the hearing loss. I also have that. That is just something you have to learn to tolerate. Have they put you on steroids at all, the downside to some of this is if you don’t get medicated quickly, it’s hard to get your hearing back. I can tell you that my ENT just gave me a shot of steroids in my ear, which is a little painful to see it could help it at all , your hearing loss is actually worse than mine with what I know so far I would probably say it’s not AIED but you should ask your doctor. Is it getting worse or is it stable and you said this happened in April 2021? I’m not a doctor if this has happened since April 2021 and it’s not getting worse you’re just at the spot where you have hearing loss you probably need to go to an ENT if you haven’t already get a hearing test possibly get a hearing aid if you need it get a little training on Tinnitus therapy which is sound therapy. I really don’t think it’s AIED. I hope this is somewhat helpful. Please keep me in the loop with what’s going on if I get any other scoop or come up with anything else. I’ll definitely send a message. I’m sorry again you’re going through this hang in there.