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Autoimmune Inner Ear Disease
2019 I had sudden hearing loss with tinnitus in right ear that later developed also in left ear. Losing hearing in both ears. Tinnitus so loud 24/7 I can barely hear through it. I’ve avoided all the foods/drink etc that increase tinnitus but no help. Hearing just keeps getting worse. Rheumatologist says all markers are fine including inflammation. Have uveitis and eczema flare ups, and acid reflux. My 3rd and 4th toes on each foot are numb. My fingers go numb when I sleep on my sides. Lower right back hurts with right thigh sciatica. All of these symptoms started around the same time. I’ve tried Prednisone 60 mg for 21 days then Methotrexate 7.5 mg once a week. Symptoms improved ( other than the hearing) a week after starting the Prednisone. Hearing and tinnitus improved a week after stopping the Prednisone but only lasted 2 weeks. Poor hearing and tinnitus came back even worse, even after increasing the Methotrexate to 10 mg after 3 months. Ferritin jumped to 616, GGP to 71, and ALT(SGPT) to 48. No one knows why. Starting another 21 day round of Prednisone 60 mg then Azathioprine this week. Any suggestions? I can’t find an AEID specialist anywhere.
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@needanswers7 Hello and welcome to Mayo Clinic Connect. There is a current discussion on AIED which I think you will find helpful. Here is the link:
https://connect.mayoclinic.org/discussion/anyone-out-there-with-aied/
Go to the site, gather information, and ask all the questions you want!
Is your doctor able to treat your other symptoms?
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1 ReactionWhat is an AEID specialist? Your situation sounds like mine. We are told by everyone to get used to the tinnitus and put it on the back burner. Mine has been very loud these last few days for unknown reasons. There are some things on the horizon. I am sorry. I know how hard this is because I have it too! I tried rain sounds overnight and it gave me bad vertigo. So I watch something until sleepy and then go to bed in silence with loud ringing in my ear!
@windyshores You might find someone who specializes in AIED by contacting one of these organizations:
Genetic and Rare Diseases: https://rarediseases.info.nih.gov/
National Organization for RareDiseases: https://rarediseases.org/
They have doctors that you can be referred to, but you may have to travel.
Will you call and let me know if you get a referral?
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1 Reaction@becsbuddy again, what is AIED?
AIED. Autoimmune Inner Ear Disease
I have lupus and high antibodies for scleroderma so that is certainly a possibility. I will bring this up with rheumatologist. Thank you!
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1 ReactionThank you for the links. I have searched and can not find a doctor that specializes in AIED, neither an ENT nor a Rheumatologist. Can you help me find one through Mayo? I live in NC and am willing to travel to find the expert. My ENT and Rheumatologist do not have experience with this condition and have no one to refer me to. Thanks!
New to this forum. Glad to read input from others who battle with autoimmune disease like I do. Look forward to sharing and receiving personal experiences and tips that may help each other.
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6 ReactionsWelcome @lb1023, Connect is a great place to learn from the experiences shared by other members. Here is a link to the list of discussions in the Autoimmune Diseases Support Group if you would like to search through them to find specific discussions - https://connect.mayoclinic.org/group/autoimmune-diseases/.
Are you trying to find answers for a specific question or symptoms you have?
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1 ReactionWell actually, I'm looking for both. I have a very complicated problem that many ENT Drs. I've seen are stumped to help me with. It's an extremely agonizing problem with symptoms and the anxiety and stress it causes me. It has caused my lupus and Sjogrens to go into a flare that is now out of control with what I believe there is no recovery from. My autoimmune condition has now focused on my ears and I have had the Eustachian tubes of both ears blocked for two years now with not ONE minute of relief. I'm beside myself. I've tried everything I can think of but nothing and I mean NOTHING helps. Just wondering if anyone else has ever had such a horrific problem and what they did to help themselves cope. I just want to connect with like-minded people who understand this type of medical affliction. Thank you for your response to my post. It is much appreciated johnbishop.