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I have just been diagnosed with this. Has anyone dealt with this? What were the treatments used and for how long? Did it ever go away and not come back? Thanks
Yes, haven't heard of it. But I guess it is possible for the body to attack any part of itself. Like I have autoimmune thyroiditis.
Usually they find antibodies in the blood.
I hope you can get some care for this condition.!!
Yes, haven't heard of it. But I guess it is possible for the body to attack any part of itself. Like I have autoimmune thyroiditis.
Usually they find antibodies in the blood.
I hope you can get some care for this condition.!!
Is extremely rare disease, I haven't heard of it either.
but yes all autoimmune is the body attacking itself.
I had all the bloodwork done and the ANA test came back positive twice. I had hearing loss in April with fullness in the ear and some tinnitus. I went to the ENT, had hearing tests and was put on steriods. The tinnitus went away and the hearing came back to normal. However, the fullness in the ear came back a week after I finished the steriods. This went on for 3 months and I have been on and off steriods 3 times. My ENT seems to think that I am one of those people that just need to be steriods occasionally. How is being on steriods 3 times in 2 months on an occasionally basis? I then went to a Rheumatologist and got tested for all other autoimmune diseases and everything came back negative except the ANA again and the antibodies in the blood. And since my ear is the only thing affected, they seem to think I have the Autoimmune Inner Ear Disease. Since Im not happy with the ENT's approach to my treatment, I made an appt with another ENT in Manhattan who has more experience with this issue. He's a Neurotologist. Hopefully, he will be a better doctor and provide some treatment. i constantly have the fullness and/or clogged in the left ear. This has been going on for more than 3months now with no relief.
I was dx with AIED last year. I had some sudden hearing loss and had tubes put in my ears as I thought there was fluid behind my ear drum. After the tubes I didn't recover my hearing. I had the ANA test done as well and the marker was positive. I had significant ENT problems as a child and am deaf in in my right ear. I had the sudden hearing loss in my left ear. I just had a 6 month check up and was told similar things to you - recommended to see a rheumatologist, suggested use of chemotherapy drugs, steroids, etc. I was given steroids last year and they did nothing. My ENT also recommended the amino acid NAC. I have also seen some references to other issues with nutrition, but my doctor doesn't seem to believe it would do much. I have asked the audiologist to comment on this. I have tinnitus as well and my doctor stated that the methods I've researchd (sound therapy, biofeedback, etc. ) will not work for tinnitus caused by inner ear autoimmue disorder.
I am going to continue to pursue nutritional issues and other avenues of support. My ENT stated this disorder was discovered in 1988 and is new, rare, and so it's tough to know what works. He told me Rush Limbaugh (spelling?) has this disorder and now has a cochlear implant.
I'd like to stay in touch with you to hear what the neurologist says. I'm new to this site and not sure how to keep track of your posts, but would like to stay in touch. I was and am overwhelmed by the idea of losing all my hearing. My doctor stated this disease is progressive, and that it cannot be reversed though it can be halted.
Quote:
Originally Posted by tooshort
I had all the bloodwork done and the ANA test came back positive twice. I had hearing loss in April with fullness in the ear and some tinnitus. I went to the ENT, had hearing tests and was put on steriods. The tinnitus went away and the hearing came back to normal. However, the fullness in the ear came back a week after I finished the steriods. This went on for 3 months and I have been on and off steriods 3 times. My ENT seems to think that I am one of those people that just need to be steriods occasionally. How is being on steriods 3 times in 2 months on an occasionally basis? I then went to a Rheumatologist and got tested for all other autoimmune diseases and everything came back negative except the ANA again and the antibodies in the blood. And since my ear is the only thing affected, they seem to think I have the Autoimmune Inner Ear Disease. Since Im not happy with the ENT's approach to my treatment, I made an appt with another ENT in Manhattan who has more experience with this issue. He's a Neurotologist. Hopefully, he will be a better doctor and provide some treatment. i constantly have the fullness and/or clogged in the left ear. This has been going on for more than 3months now with no relief.
Is what you have "Meniere's Disease"? which is accompanied by vertigo. If so, you want to reduce your salt intake. Be careful with overuse of steroids/long term use. It can cause osteoporosis (that's what happened to me). Good luck--autoimmune diseases are tricky.
Were you able to get your hearing restored? I am going through treatment with 60 mg prednisone daily and methotraxate at this time. ENT thinks need to have cochlear implants but rheumatologist seems to think the drugs will do the trick. Hate the side effects of the drugs.
I was dx with AIED last year. I had some sudden hearing loss and had tubes put in my ears as I thought there was fluid behind my ear drum. After the tubes I didn't recover my hearing. I had the ANA test done as well and the marker was positive. I had significant ENT problems as a child and am deaf in in my right ear. I had the sudden hearing loss in my left ear. I just had a 6 month check up and was told similar things to you - recommended to see a rheumatologist, suggested use of chemotherapy drugs, steroids, etc. I was given steroids last year and they did nothing. My ENT also recommended the amino acid NAC. I have also seen some references to other issues with nutrition, but my doctor doesn't seem to believe it would do much. I have asked the audiologist to comment on this. I have tinnitus as well and my doctor stated that the methods I've researchd (sound therapy, biofeedback, etc. ) will not work for tinnitus caused by inner ear autoimmue disorder.
I am going to continue to pursue nutritional issues and other avenues of support. My ENT stated this disorder was discovered in 1988 and is new, rare, and so it's tough to know what works. He told me Rush Limbaugh (spelling?) has this disorder and now has a cochlear implant.
I'd like to stay in touch with you to hear what the neurologist says. I'm new to this site and not sure how to keep track of your posts, but would like to stay in touch. I was and am overwhelmed by the idea of losing all my hearing. My doctor stated this disease is progressive, and that it cannot be reversed though it can be halted.
Curious to know how you are doing 3 years later! I am in my 10th year, and its back with a vengeance trying to take what little I have left. I am deaf since childhood in my left and its the right that has the AIED. I hope you are doing well!
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I have been dx with this disease, too
