Author Topic: blood work identify autoimmune ear disease  (Read 310 times)

meirish

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blood work identify autoimmune ear disease
« on: October 04, 2020, 05:45:20 PM »
I told you folks bak in around 2016 that I was diagnosed with autoimmune ear disease. (AIED) It has been a long time since I saw my notes on what the blood work done to identify this...but finally found it.

It is PO Protein Zero and Heat Shock Protein.

Now, I first started losing my hearing in 1996 after a bad ear infection. I also had a bad colon (not my first time) issue at this time plus terrible balance problems(not my first time)plus bad fatigue (not my first time) but...the first time all these things hit at the same time. I also had double pneumonia and had 3 factors appointments with docs telling me the first 2 times it was hormones and nerves. This was the first time I had so many issues at the same time and, of course, now I know it was a big flare.

I was so ill I ended up taking a 4 month leave of absence from work. I also got into my good ENT at this time who has really saved me many times from more misery that could have occurred. We did have head butting occurrences quite a few times but we managed to push on through. He didn't tell me off and I didn't find a new doc. We lived through it and he learned I was right as many times as he was right.

Anyway, during the hearing loss..which came on after a plane trip out west...I had trouble hearing in my right ear when on the phone. Thought it was fluid and congestion so took antihistamines and decongestants. Back to doc off and on for ENT checks and he did hearing tests and hearing loss just became worse and worse. He called one day and told me I could go on 100 mgm of Prednisone a day for a month and I told him I would end up on a psych ward so would say no.

By 1998 I was totally deaf in that ear except for garbage can sounds as ENT called them. I had such bad tinnitus that it drove me crazy at work and I would come home and collapse on the couch with head under a pillow for 3-4 hours before I could get up and do anything. I ended up seeing my ENT's dad at the same clinic(he was an ENT also) and he did some testing and told me I was a candidate for a certain ear surgery. I had this surgery by my ENT in April 1999.

This surgery was called a Right labyrinthectomy and nerve section of the 8th nerve. I had all of the inner ear hearing apparatus removed plus the 8th nerve was drilled out with a diamond tipped drill where it entered the brain. I also had the mastoid bone around my ear removed. I ended up with a 50% loss of balance from this surgery and had to go to Elizabeth Kinney Institute for rehab and exercises to do at home. I had also ready had balance issues of some type and then added this. The exercises did wonders and I was able to work. Still have many issues that I have learned to live with.

See next post. meirish

meirish

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Re: blood work identify autoimmune ear disease
« Reply #1 on: October 04, 2020, 06:03:10 PM »
Now, my ENT had also trained in Zurich, Switzerland on base of brain/skull surgeries and does a lot of surgeries with top neurosurgeons in the cities. Many brain surgeries end up involving the base of the brain plus hosting/balance issues. I will tell you that having no balance at all for a couple of weeks is weird. I hung around on the floor a lot and had nystigmus every and any time I moved my head.

Now, learning to live with this was something that took a long time and I have many issues that have stayed with me. However, I have no problem driving for some reason and my ENT says that I use different nerves for that. I have many balance issues and I liken it to having a level in my brain and my body is always working to keep the bubble in the middle. This makes the nervous system tired and anything like driving or sorting papers things using the eyes with head movement, etc.,causes me to be terribly fatigued the next day.

 Now, I ran through all the above stuff because I wanted to point out that back in 1999 there was no type of testing to diagnose the hearing loss that I had. This blood work has just been out in the past few years. When I was diagnosed with these 2 AIED my immunologist put me on strong steroids once a month IV (6 months) to see if it would help but it was really too late. I am losing the hearing in my left ear now and not a happy camper but am also happy that I will be pretty old by the time I am totally deaf. I am working on learning to deal with the mute with print on TV.

So, if you are losing your hearing or anyone you know is losing theirs make sure to encourage them to get this blood work done. Others may not have any autoimmune diseases but losing the hearing could still happen to them for this reason. Sorry this was so long. I tend to be long winded and want to explain things. Take care meirish

meirish

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Re: blood work identify autoimmune ear disease
« Reply #2 on: October 05, 2020, 08:16:31 PM »
I guess I thought there would be people here with hearing loss and suspected autoimmune involvement. WE have had people over the years post regarding this. I am long winded but tried to give some idea of what can take place with the problem and with a surgery of this kind. meirish
« Last Edit: October 05, 2020, 08:18:53 PM by meirish »

Scottietottie

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Re: blood work identify autoimmune ear disease
« Reply #3 on: October 06, 2020, 05:03:20 PM »
Hi  :)
One of my ears has had precious little hearing ever since I can remember. I had a mastoid bone removed when I was about 14 but I was deaf before that. I could really have done with a hearing aid at school but didn't get one till I was 50.

I do wonder if any of it has to do with autoimmune. Now have tinnitus pretty much all the time.

I do empathise with hearing loss.

Take care - Scottie  :)
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meirish

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Re: blood work identify autoimmune ear disease
« Reply #4 on: October 06, 2020, 09:56:38 PM »
The surgery that I had for my tinnitus was hard to recover from but was not painful. However, it did help my tints. Tinnitus was so bad prior to surgery that I would hear birds chirp(kind of pretty) and electrical current like sounds but the worst was the sound of a jet taking off that would get louder and louder and latest too long.

I sure hope that there are people who opt for the blood work to check out their hearing loss. If you catch it early and can have the steroid IV's I would think you would have better luck than I did. meirish

Carebear

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Re: blood work identify autoimmune ear disease
« Reply #5 on: October 07, 2020, 10:32:57 AM »
The timing of this topic is so interesting for me.

I just saw a new ENT for my 20 years of dripping nose and sinus infections, and mentioned the ringing and clicking in my ear during my appointment.

He tactfully said it may be hearing loss and my age, then set up a hearing test and also environmental allergy testing.

He seemed knowledgeable about Sjogren's. And these tests will at least give us a baseline.

Honestly,  I hope it is my age that is causing the tinnitus (and no doubt hearing loss) and allergies that need to be addressed. I don't think I can handle anything more

I need to learn more about these blood tests, just in case it becomes necessary.  Thanks, Irish.
Sjogren's syndrome, RA,  Raynaud's phenomenon, Celiac Disease, Hashimoto's Thyroiditis, Grave's Disease, Fibromyalgia, Osteoarthritis, Osteopenia, Cervical Stenosis

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meirish

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Re: blood work identify autoimmune ear disease
« Reply #6 on: October 07, 2020, 11:28:25 PM »
carebare, I have to admit that I do't know much at all about those tests. Seems like the last 5 years or so many things have been happening health wise and I just manage to keep ahead of the rush.

I will add that I would think not everyone needs to have the surgery that I did and there are possibly different treatments now. Remember, my surgery was in 1999. Also, it too time to recover but in 2 weeks my hubby would take me to work and I would work a few hours setting up insulin and keeping up with doctors orders.

My boss, who was about the same as my youngest son then would walk down the hall behind me and tease me about walking like a drunk. I had a hard time with steps and sidewalks at first but that has improved but I always watch where I walk and always wear sensible shoes...darn. Believe it or not there are other autoimmune things that have caused me grief....but hey, we are all tough and we learn to push on through.

I hope that you have good results from your testing and that this info is helpful for your ENT. He sounds like a keeper. Good luck. meirish

jazzlover

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Re: blood work identify autoimmune ear disease
« Reply #7 on: October 08, 2020, 07:52:19 PM »
Thanks for the info!!!
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, recovered from Lyme disease