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Old 09-28-2011, 12:31 PM   #1
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Autoimmune Inner Ear Disease?

Autoimmune Inner Ear Disease, anyone?

I was recently diagnosed with this and was wondering what experiences others have had with it. It is fairly rare so it's tough to find info about what others have gone through. Anyone? Thanks.

 
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Old 10-02-2011, 09:41 PM   #2
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Re: Autoimmune Inner Ear Disease?

I have inner ear disease but no hearing loss. I have lost balance function was given a test that showed antibodies to the nerve but not the choclear. The doctor doesn't tell me I have autoimmune inner ear disease because I think you have to have hearing loss. Just that something either viral or immune wiped out my balance system. I have this bilaterally which is also odd seems to me if it had been a virus would have affected one side not both unless the virus caused an autoimmune reaction then it would affect both. So thats about it had it for 25 years pretty much changed my life I am at home mostly haven't worked or driven in years. Others have had more success living more normal. I think because not having run of the mill symptoms like hearing loss they didn't give me steriods or anything in the beginning. Well they gave me a one time dosage but not like or autoimmune sitation. So i went for 6 years before being diagnosised and by that time the damage was done.

 
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Old 10-07-2011, 04:38 PM   #3
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Re: Autoimmune Inner Ear Disease?

Sorry to hear about your diagnosis. I have SLE and had a sudden severe hearing loss in one ear a year ago. I had the hearing tests and was put on real high doses of prednisone. It didn't help my hearing so they said I most likely did not have a devastating autoimmune hearing issue, other than Lupus. I have frequent hearing tests just to be sure.
Have they given you any treatments or prognosis yet?

 
Old 10-14-2011, 06:52 AM   #4
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Re: Autoimmune Inner Ear Disease?

Thank you for the responses. My case is not textbook so that made it tricky to diagnosis.

I became ill very suddenly about a year ago. My symptoms began with dizziness, difficulty concentrating, and a feeling of weakness. They progressed to include a whole slew of things - forgetfulness, changes in vision, fatigue, diminished sensation, altered circulation in my hands and feet, occasional hot flashes, occasional mild left sided chest pain, and probably a couple of other things that the brain fog prevents me from recounting. My symptoms wax and wane in intensity and while some are present always, others show up only during a symptom flair up. I have had TONS of tests done with normal results.

I was recently diagnosed by an immunologist who tested me for 3 antibodies known to attack the inner ear. I was positive for one of them (anti-protein zero) and borderline for another. I did have a day of vertigo early on that clued him in to test for these antibodies. He said that the changes I have had in vision are probably a result of my body's compensation for the vertigo. I have not complained of ear problems throughout this whole thing but had noticed I've been playing the car radio at a higher volume and casually wondered whether the change was in my hearing or a problem with speakers. I've had occasional, mild ringing in my ears for years that does not bother me. Apparently this antibody attacks the peripheral nerves as well as those in the cochlea so that explains my changes in sensation and circulation.

Treatment is high dose IV steroids, monthly, for 3-6 months. The first dose did not help but the MD said it could take 2-3 months to notice a difference. Fingers crossed!

 
Old 10-26-2011, 07:19 PM   #5
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Re: Autoimmune Inner Ear Disease?

Hi Veggie2.
What other blood tests were taken for the inner ear. My understanding is that there are not specific antibody tests for the inner ear. I have had other systemic autoimmune tests taken, with the only one that is *supposed* to be closely related to the inner ear called a heat shock protein 70. I am still waiting on results for it

 
Old 10-29-2011, 10:50 PM   #6
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Re: Autoimmune Inner Ear Disease?

I am still in the process of trying to find out what is wrong with my left ear. In August I had it flushed because I thought it was a wax build up. It did not improve. Since then I have had Cipro drops, two weeks of Augumentin, 2 different ENTs, an incision made into the ear drum, an audiology exam, and finally an MRI. I find out this week the results of the MRI. I do have a hearing loss which they said is sensioneural. My mother had numerous autoimmune problems, as does my sister. I do not think I want an ANA test done. A friend told me it makes it hard to get insurance. The latest ENT believes it could be Lupus. My ear still feels stuffed, and the eustation tube crackles all the time. Any insight would be appreciated. I also have severe hip joint pain which I thought would be arthritis, but the bone density scan was negative.

 
Old 11-08-2011, 05:24 AM   #7
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Re: Autoimmune Inner Ear Disease?

Quote:
Originally Posted by Taavinen View Post
Hi Veggie2.
What other blood tests were taken for the inner ear. My understanding is that there are not specific antibody tests for the inner ear. I have had other systemic autoimmune tests taken, with the only one that is *supposed* to be closely related to the inner ear called a heat shock protein 70. I am still waiting on results for it
Hi Taavinen -

As I understand it, you are right about heat shock protein being the most closely linked to the inner ear. It seems that anti-protein zero is also linked with the inner ear but the correlation isn't as strong, from what I can surmise. I was also tested for anti-collagen type 2, which was borderline. The immunologist seems to be very cutting-edge, he told me that most ENTs were not aware of some of this info. Indeed when I went to an ENT recently he admitted he had never heard of protein zero and wasn't so sure about my diagnosis. It doesn't help the diagnosis that I don't have sudden unexplained hearing loss, which is the hallmark of AIED. Though many of the websites I've read state that it can be characterized by hearing loss OR vertigo. It is incredible how tricky to figure out these health problems can be!

Hope your test results were good!

 
Old 11-08-2011, 05:29 AM   #8
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Re: Autoimmune Inner Ear Disease?

Quote:
Originally Posted by palmtreegirl View Post
I am still in the process of trying to find out what is wrong with my left ear. In August I had it flushed because I thought it was a wax build up. It did not improve. Since then I have had Cipro drops, two weeks of Augumentin, 2 different ENTs, an incision made into the ear drum, an audiology exam, and finally an MRI. I find out this week the results of the MRI. I do have a hearing loss which they said is sensioneural. My mother had numerous autoimmune problems, as does my sister. I do not think I want an ANA test done. A friend told me it makes it hard to get insurance. The latest ENT believes it could be Lupus. My ear still feels stuffed, and the eustation tube crackles all the time. Any insight would be appreciated. I also have severe hip joint pain which I thought would be arthritis, but the bone density scan was negative.
Sorry to hear about your ear and hip, PalmTreeGirl. Any word on the MRI results? I cannot speak to the insurance piece but I think it would be advisable to have the ANA done. Is the ENT sending you to a rheumatologist to investigate this? With the severe hip pain and the ear stuff (which could be autoimmune) I would wonder about rheumatoid arthritis with associated autoimmune ear. They could certainly check your ear-related antibodies as well. Just my thoughts. Good luck!

 
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Old 11-13-2011, 07:24 PM   #9
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Re: Autoimmune Inner Ear Disease?

Thanks for the response. The MRI results were very interesting. As a nurse, I took a long look at it. The mastoid cells were clear on the right side, and completely fluid filled on the left side. The ENT put a tube in my ear and suctioned out some fluid. I am now using Ciprodex drops twice a day. I go back to the ENT next Wednesday. It is such a slow process, and it has not improved except that venting it did help a little with the stuffed feeling. It is reassuring to know that I am not alone. Thanks!

 
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