1. < Autoimmune Diseases

Autoimmune Inner Ear Disease

Posted by needanswers7 @needanswers7, Feb 13 10:08am

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.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Mentor
Becky, Volunteer Mentor | @becsbuddy | Feb 13 2:43pm

@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?

REPLY
1 reply
windyshores | @windyshores | Feb 13 4:44pm

What 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!

REPLY
1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Feb 13 6:41pm
In reply to @windyshores "What is an AEID specialist? Your situation sounds like mine. We are told by everyone to..." + (show)
@windyshores

What 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!

Jump to this post

@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?

REPLY
1 reply
windyshores | @windyshores | Feb 14 7:59am
In reply to @becsbuddy "@windyshores You might find someone who specializes in AIED by contacting one of these organizations: Genetic..." + (show)
@becsbuddy

@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?

Jump to this post

@becsbuddy again, what is AIED?

REPLY
1 reply
Kathryn M. Carroll | @kathrynmc | Feb 14 8:13am
In reply to @windyshores "@becsbuddy again, what is AIED?" + (show)
@windyshores

@becsbuddy again, what is AIED?

Jump to this post

AIED. Autoimmune Inner Ear Disease

REPLY
windyshores | @windyshores | Feb 14 7:00pm

I have lupus and high antibodies for scleroderma so that is certainly a possibility. I will bring this up with rheumatologist. Thank you!

REPLY
needanswers7 | @needanswers7 | Feb 18 8:21am
In reply to @becsbuddy "@needanswers7 Hello and welcome to Mayo Clinic Connect. There is a current discussion on AIED which..." + (show)
@becsbuddy

@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?

Jump to this post

Thank 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!

REPLY
Please sign in or register to post a reply.