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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 suzanne970

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Posted 25 September 2007 - 11:02 AM

Can anyone tell me if they have had any form of hearing problems/loss of hearing with this condition?

Sue

#2 Sherion

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Posted 25 September 2007 - 12:46 PM

Suzanne,

I don't know if it's from the sclero or just because I'm getting older but I have a real problem with my hearing. My ears itch on the inside really badly, almost feels like water in them. If someone is not facing me, I can hear their voice but may not be able to understand what they are saying. I'd be interested to know if it's sclero related, I always forget to ask my doctor about it.

Sherion

#3 peanut

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Posted 25 September 2007 - 01:41 PM

I think there might be something related to hearing. My hubby says I don't hear things well and if he's not facing me I do have a hard time hearing. It doesn't help that he mumbles sometimes... he he

peanut

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my HMO makes me wear a helmet...

#4 Shelley Ensz

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Posted 25 September 2007 - 02:25 PM

Hi Sue,

Yes, there are a few of us that have hearing problems and/or autoimmune ear disease. We have a web page on it, on our main site, at:

Autoimmune Ear Disease
http://www.sclero.or...rs/a-to-z.html
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#5 aniwallar

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Posted 25 September 2007 - 02:40 PM

Wow, I also feel like my hearing is not as good. My left ear also itches and I feel like I have a bug walking inside. I ask my doctor to look and she said that everything looks OK.
Ani

#6 nan

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Posted 25 September 2007 - 03:55 PM

Suzanne,
I had been noticing since last January that I wasn't hearing properly. When I finally asked my husband and son if I should have my hearing checked they started laughing. That's when I knew I needed to get a hearing test done. I went to an ENT and had a full evaluation done and hearing test. I have a slight hearing loss in my left ear, not enough for a hearing aid, but enough to make me realize I am not hearing properly. I have to have a yearly hearing test done now. I don't know if it's related to scleroderma.
Nan

#7 Sherion

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Posted 25 September 2007 - 04:29 PM

Shelley,

I found your article very interesting! What doctor would we ask about this? Would it be our rheumatologist or do we need an ENT?

Sherion

#8 Shelley Ensz

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Posted 25 September 2007 - 04:40 PM

Hi Sherion,

You would probably want to go to an ENT (Ear Nose Throat) specialist, and not a rheumatologist because the most they could do is refer you to a hearing specialist. Depending on how your insurance works, you may need a referral.

I have autoimmune ear disease, tympanosclerosis -- among many other things, as I have multiple autoimmune syndrome (MAS). It has only caused slight hearing loss in one ear and scarring on both ear drums, but luckily it has not progressed.

I understand that if it is caught in time, while inflammation is still present, there are some treatments that can halt its progress; but mine was caught a few months after the fact since my doctor just kept saying there was water on my ears. It turned out that the "water" was an optical delusion caused by the scarring.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#9 barefut

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Posted 25 September 2007 - 05:44 PM

Interesting. I never knew hearng loss could be autoimmune related. I have a terrible ringing in my ears all of the time. Sometimes its worse than other times.

I've noticed I always hold the phone to my right ear when talking on the phone. I just don't hear as well with my left. Never had a hearing test before. Maybe it's time...

Thanks for the info.
Love,
Barefut

#10 bookworm

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Posted 25 September 2007 - 09:05 PM

Hi, Sue!
Funny you should ask about hearing. I just got my first hearing aids a week ago today. My doctor believes it's an autoimmune hearing loss that I have.
I had excellent hearing until about one year ago. Then, one morning, I woke up with my left ear feeling the way it does on an airplane -- stuffed up. I had just gotten over a cold and thought this must be related. After about a day when it didn't go away, I went to my primary care doctor. I didn't want to mess around with my hearing because my mother was profoundly deaf in her later years so I thought it might somehow run in families.
My doctor looked in my ears and said there was a lot of fluid in the left one. She gave me a decongestant or antihistamine (can't remember) and told me to come back in one week.When she looked again, she said the fluid had almost all dried up, but I still had a stuffy feeling and couldn't hear well at all out of that ear.
Several trips to her, then on to an ear specialist and a CAT scan and I was told that I had nerve damage and that my hearing wouldn't return. I can't tell you how surprised I was. How can you go to bed one night with acute hearing and wake up practically deaf in one ear?
I decided to go to my mom's old ear specialist in the city. I guess I wanted a second opinion and I didn't care for the ear specialist I'd been sent to in my town. So off I went, but he confirmed the diagnosis of nerve damage. He said my hearing test showed enough hearing loss to warrant hearing aids but that it was my choice. At that point, I thought I didn't need them as I still could hear out of the right ear and I suppose I was hearing some things with the left ear, too.
But I was supposed to return for a one-year check, which I did last week. I was feeling that my hearing was getting worse and worse and I was really beginning to have trouble understanding people.
This time, the hearing test showed my hearing had improved in the left ear (the bad ear) but it had grown worse in my right ear! I thought the doctor seemed to think that was a little odd, so I asked him if he thought it might be autoimmune related and I reminded him I had CREST. He looked back at my chart and then he said, "I do believe that is what's going on."
Again, hearing aids were mentioned and this time I decided to try them. There actually was a trial period of one month, after which you can return them and get most of your money back if they aren't working for you or you don't like them.
I love them! I was beginning to feel more and more left out of things. I just couldn't make out the TV or conversations. Now I can hear again and the hearing aids don't even show. They are wonderful.
I do wonder now if there really was fluid in my ear or if that was scarring. The fact is that after a week on the decongestant, the fluid appeared to have dried up, so I'm thinking it must have really been fluid. But, who knows.

Mary in Texas

#11 susie54

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Posted 26 September 2007 - 12:37 AM

Hi Suzanne,

Yes, hearing can be affected by automimmune as everyone has mentioned here. I have been diagnosed with autoimmune ear disease once in eight years and it has scarred both ears but has not done anything since then. Once inawhile I feel it acts up but not too bad. I would check it out as your ears are precious things to have. Susie54

#12 Vee

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Posted 26 September 2007 - 01:25 AM

Sue,

What????....................heehehehhe :P

On a serious note.
I've also noticed a decrease in my hearing ability. I'm a hairdresser and of course, my clients face away from me. I find myself turning thier chair toward me a lot when they are talking to me. I thought maybe it was just years of blowdryers and the fact that I'm creeping up the birthday ladder :blink: I also find that certain tones I can't hear. And when I watch the tonight show, I have to turn the t.v. up when Jay Leno talks. I can;t hear his voice, but I can hear his guests just fine. Age or sclero? Not sure. I've also had bouts of the itchy ear.

Interesting subject.
Happy people don't have the best of everything, they just make the best of everything they have!

Warm and Happy to you! Vee

#13 suzanne970

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Posted 26 September 2007 - 02:03 AM

Thank you guy's I had my hearing test yest and been told scarring in ears and now waiting for a hearing aid for both ears, I only found by chance out about the AIED Autoimmune ear disease as I work in a general practitioner surgery. I asked the audiologist about this she said to ask the doctor when I go back and see him in ENT as the ears are made up of connective tissue? interesting ah? Full full diagnosis is not known yet but SCL-70 pos and raynads etc at 35?

#14 Sheryl

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Posted 26 September 2007 - 02:05 AM

I also have had hearing problems. I received a hearing aid about 5 years ago. It didn't seem to work very well. I used it until I lost it about 6 months ago. I guess I should get rechecked. I didn't know it could be autoimmune related. I have to make an appointment to get another hearing aid. It was almost worn out anyway. And big and bulky. So, I will be glad to get a newer version. I am so use to not hearing that not having the hearing aid hasn't bother me much lately. I will go and take care of my ears. EEEEEEEEEEccccccccccccccKKKKKKKKK! More doctor apointments to make. So, much fun. Oh! also don't forget to get your flu shots everyone. Very important. I was reading an artical about the nasal style flu medication. All of us with autoimmune disease are not suppose to receive that style vaccine. The old needle style for us. No matter how young you are. Sheryl
Strength and Warmth,
Sheryl

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#15 CraigR

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Posted 26 September 2007 - 05:31 AM

I have a hearing loss that I presume to be related to sclero or medication for it. I haven't been exposed to loud sounds much (didn't even listen to loud rock music in my younger days...)
One evening a few years ago I fell asleep for a short period, then woke up with loud ringing (tinnitus). Since them I have a gradually worsening high frequency hearing loss. At the time, I was taking Plaquenil, which may have had something to do with it. There is also Hyperaccusis, which is a lowering of the threshhold when loud sounds become painful.
Oddly, the hearing loss is not what I expected - I can still hear, but words tend to sound slurred, since many of the subtle elements that differentiate sounds are in the high frequencies. Nasal voices are almost impossible to understand, no matter how loud. People who speak just barely loud enough to be heard are very frustrating. I often wonder why their parents didn't remind them to speak up! I have hearing aids, and they help somewhat, but often not enough to hear like I used to, and they increase the problem of hyperaccusis.

Craig

#16 peanut

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Posted 26 September 2007 - 06:25 AM

Vee, you're so funny. I totally wanted to do the what? joke too

Sheryl, I know how you feel about eek! making another dr. appt. I have so many right now and to find an ENT specialist...

I've been really proactive about all my symptoms but now I'm getting tired. My hearing is sometimes muffled if the person isn't facing me. I suppose I should get it checked out so it can be monitored and create a baseline, etc... but I'm just so tired right now.

peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#17 barefut

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Posted 26 September 2007 - 07:50 AM

Okay, so has anyone experienced a hypersensivity to sounds? Even though I think I may have some partial hearing loss in my left ear, I have times when any/all sounds drives me crazy!

Everything is SO grading like fingernails on a chalkboard to me. I have to send the kids outside and turn off all noise to regain some sanity. Maybe it's just an over stressed mom thing?

B

#18 Vee

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Posted 26 September 2007 - 10:56 AM

Oh man, I'm with ya' on that one too!!! I thought it was just me being impatient wtih my kids, but my youngest one especially has a higher pitch to her voice and if she raises it just right, it's like she has a bull horn right up to my ear! Stange how we can't hear some sounds and others are way toooo loud.

Sheryl, I'm with ya' on the eeeeeekkkkkks!!!! Another doctor!! I've been thinkin' of getting my nodules taken off my vocal chords. I think I told you that when I saw you last Saturday. But I feel the same. Not another doctor!! I haven't finished with my knee fiasco yet. Will it ever be done? Always something. It's a good thing I haven't won the lottery, I'd have doctor appt.s booked for the next 10 years for plastic surgeons alone!!!!! B) Hmmmmmmmmm.........I think I'm getting addicted to doctor's offices? Any remedy for that?
Happy people don't have the best of everything, they just make the best of everything they have!

Warm and Happy to you! Vee

#19 peanut

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Posted 26 September 2007 - 03:20 PM

Addicted to doctors.. you are soo funny vee!

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#20 Sheryl

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Posted 27 September 2007 - 01:05 AM

I must not have HEARD about the vocal cord surgery. But, I can learn more on our visit next Thursday and we can talk about our addiction to Doctor's at the same time.
Sometimes I think about making a dermatologist apt. For the scratching.
Or maybe an algerist would be the better option.
Lactose problem is a maybe? Make flu shot apts. Oh! don't for get mamo apts and gynocologist apts. Regular doctor, rheumatologist apt. and Pulmonary apts. Humm! Oh! Don't forget our dentist. I guess if you sat back and thought about it you would truly think. I'm addicted. Every doctor at least 2 times a year. Wow! Guess I better start making apointments. Oh! I made mine for my optomitrist and ear specialist. Lets not forget them. EEEEEEEEEEccccccccccckkkkkkkkk!
I am thinking of everyone else right now. Evough is enough. Sheryl
Strength and Warmth,
Sheryl

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