Hearing Loss Community
Autoimmune inner ear disease
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Autoimmune inner ear disease

So here is my story. About 5 years ago- woke up and felt like i had water in my ear. No pain or hearing loss. Didn't really think much about it. Gradually over three years developed ringing, buzzing, various clanking noises in my right ear. Hearing also diminished slowly. At a physical my GP examined- and found nothing out of ordinary. He then referred me to an ENT. Had MRI which indicated 8th nerve "enhancement" but no other abnormalities. I was started on high dose prednisone, and was sent to be tested for various viral diseases. All negative. After 3 months of steroids, hearing was retested and no change. I was below norm for low tones and profound hearing loss in high tones. 2 steroid injections in ear- 2 weeks apart with no change. I was diagnosed with autoimmune inner ear disease and sent to a rheumatologist who put me on methotrexate for one year to suppress my immune system which she felt was destroying my inner ear. Long story short--- I was not convinced that this doctor really understood this condition and I hated what the meds were doing to my body- so after about 3-4 months, I quit taking the meds and stopped going to doctors. Maybe a bad decision but I was sick of everyone just plugging me full of meds. I still have ringing in right ear 100% of time and my hearing is almost completely gone in right ear. Can anyone help me?
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thanks
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I understand how it feels to have hearing and to lose it.  My hearing loss is also thought to be a result of some auto immune disease but nothing was done about it at the right time, or so the Specialist said.there is nothing he can do about it now?  I did feel pain at one time, and a gush of fluid that stained the pillow case, but don't know what this was?.  I have Hearing loss in both ears. .  I am not ready to lose anymore hearing.  I hear with great difficulty,   it's ruining my life.   I paid over $4000 for my HA's and now all I can think of is to try another company brand.  Why do HA clinics take deaf people to the cleaners?.  I heard that there is a tremendous mark up at these clinics?.  It isn't the manufacturers, it's the clinics!.  Hope there is something that can be done for you and for me.  
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