Hearing Loss?
 

This past Monday, I showed my neuro my new hearing aide. He was surprised and said you never told me you had a loss!!! (Whoops!)

Anyway he went on to say that there is a new study? or article? or something that is saying that hearing loss can be the FIRST symptom of MS. Which in my case would be true.

So, I'm really curious how many of us have permanent or had temporary hearing losses.....

This is a anonymous poll.

I checked "permanent loss in one ear before MS symptoms," but actually the hearing loss occurred a few weeks after what I consider the first of all those weird symptoms (painful electric shocks under my ears in mid-1999).

The vast majority of the weird symptoms began a couple months after the hearing loss that year.

I did have some dizzy episodes, stabbing head pains, achiness, and constant wooziness going back to the late 1980s, but I don't know if those are related to all the other stuff. I never thought anything about those old longtime symptoms until 1999 when I lost my hearing and then all the other stuff happened.

So, my hearing loss was really one of the first two BIG weird/unexplained things that happened to me.

Haven't ever been diagnosed with anything, though.

Nancy T.

I had hearing loss but didn't realize it until after my last round of steroids. The hearing has been fine since then. I don't know when I lost it though.

I've had tinnitus in both ears since I was a small child. I've had it as long as I can remember. The worst it's been, was when I had mononucleosis and my tonsils had swollen so big that I was in danger of having breathing difficulties.

The tonsils (which are naturally the size of golf balls. My doctor freaks whenever I get a sore throat and visit him for meds) had swollen up so badly and were really infected. The infection made it's way into my ears so I couldnt hear for about 3 weeks to a month. I couldnt talk because of all the swelling in my throat, and my nose was so plugged up it was (eww!) constantly dripping some sort of brown foul nastiness, which was fairly constant the entire time I was sick.

The only thing I could hear was this loud roaring noise, like sitting next to a giant concert speaker that was transmitting static, or it kind of sounded like the ocean, only really really loud. Drowned out everything.

Ironically, I'd dropped out of my ASL (American Sign Language) class because of the mono. My parents didnt know sign, so I had to use a notebook to communicate with them for part of the time. My mom kept ticking me off because I couldnt hear her very well, and I certainly couldnt respond back to her vocally...she'd constantly ask me questions that I couldnt answer back because I couldnt talk. Drove me bananas.

Since the mono, every once in awhile, my ears will feel like they're popping, and I'll have muffled hearing for anywhere from a few minutes to an hour after my ears "pop" or whatever it is that they're doing when that happens.

Had total hearing loss in left ear some years ago - went to ear MD and he said I was stone deaf and that I'd never hear again - hearing came back along with tinnitus and there are many soft sounds and tones I can't hear - hearing aids are a problem with my glasses as I get constant feedback - being in groups of people is horrible as then I can't understand anything - neuro said deafness was probably caused by mylogram - that an air bubble had lodged in my ear - don't know - just was glad what came back - did !!

Wow! I had the same thing happen to me! Until I was dx'd I never thought about the hearing loss as something to do with MS.

Everything was fine then all of a sudden my left ear popped, no pain, nothing. I lost all hearing in that ear. Dr. sent me to an ear specialist and he said I'd never hear again and the only thing he could explain was that I must have had some sort of bubble that caused it.

It was about 4 or 5 months when all of a sudden I was in Krogers and BAM! I could hear out of my left ear again. LOL left groceries and all and went straight to specialist...he still couldn't really explain what happened.

I have trouble with crowds or a lot of different sounds at one time, plus constant "static" sound in that ear (I joke that maybe sometime the static will clear and I'll tune into a good radio station lol) Right ear is fine, no problems at all with it.

i notice occasionally i have troubles with clarity, with the last few flairs

and am pretty sure it has nothing to do with the who concert or the zeppelin, marshall tucker, charlie daniel, moody blues, david bowie, kinks, clash, rare earth, allman bros, lynard skynard, jethro tull, fleetwood mac, tom petty, blue oyster cult, rainbow, chicago, and even elton john, elvis costello, Santana, Pink Floyd, Rush, leon russel and his new grass revial, heart, humble pie, jackson brown, genesis, clapton, alvin lee, johnny lee hooker, the eagles, ac/dc, black sabbath, areosmith, the dead, the dead, the dead , the dead, the dead....... yeah dead head here, i am pretty sure it was the barney concert i took my two little ones to when they were tots yeah thats it barney did this to me:yikes:

An AIR BUBBLE as a cause of hearing loss??

I've never heard of anything like that, and believe me, I've read up on sudden hearing loss quite a bit! This must be some kind of new theory!

I've been deaf in one ear for 9 years, since I sneezed hard... maybe one day in the grocery store it will suddenly come back to me!? :D

If anyone has a link to an article about this theory, please let me know!

http://i99.photobucket.com/albums/l2...006/barney.jpg I Love You! You Love Me! Oh go on admit it you do! LOL :D

I didn't vote in the poll because I wasn't sure how to vote. We have not been dx'd yet.

My daughter, son and I all get hearing loss. It will be both ears. It will come back.

My daughters is the worst. She loses enough that she has hearing aids for both ears. Nerve damage in both ears that will never come back.
They are afraid she will go deaf.

Steroids do help my daughter. It always brings her hearing back.

My son and I just deal with it. Ours does not go down as low as Holly's does.
We know in a week or two it will come back.

So far, all they know is it's autoimmune. They have no clue which autoimmune disease it is.

Now considering methotrexate for my daughters hearing and other symptoms.

DAY

I honestly have no clue how to answer. My last hearing test was part of my DOT physical in 2003? They put me in a sort of phone both box with headphones on and told me to push the button when I heard the sounds in the headphones.

LOL I had too much trouble hearing the phones ringing in other rooms, people walking down the hallway talking to clearly hear the sounds. Their opinion was I had suffered some hearing loss in my right ear. 30+ years of sitting next to a turbo charged diesel engine or the sound proofed box wasn`t exactly that?

Maybe so, maybe no?

My bilateral hearing loss started when I was in my late 30s, not my earliest symptom, but not too far behind.

Loss is severe now, profound in a very few ranges, and is accompanied by what are probably cognitive issues, i.e word and sound processing problems as well as, during bad periods or days, pain with loud noises.

Degree of "processing" ability does seem to change a little with good days/bad days, and with what I now know were exacerbations. The actual loss is irreversible.

Hearing impairment has, until recently, been the hardest to deal with as it has left dh and me very isolated. Fortunately, he has always been reclusive and over the years, prior to major impairment, I had already slowed down on my social "flitting" ;) so it hasn't been as awful an adjustment as it might have been. :)
.

Wow, all I can say is to make sure your neuro's all know your stories.

I too have had the and "pop" out and "fade back in" hearing in both ears and I totally don't believe there was an air bubble! Or the "fade out" and suddenly "come back" hearing. Tinnitus has always been a problem for me. As a child I had tubes in and out so many times that I lost count!

I will see if I can't get a hold of the article my neuro is referring too.

Frank, I do believe your problem with hearing is associated with that long list of music!!! :D

Tante, do they attribute your hearing loss to MS? Or something else? Have they ruled out AIED (autoimmune inner ear disease)? Have you had blood tests to rule that out? Do steroids help your hearing loss? Do you have any family history of hearing loss?

I'm just curious, because I think that degree of hearing loss is a bit unusual in MS, isn't it? Is something else perhaps going on?

Sorry if you've posted about this elsewhere and I missed it!

Can you get a cochlear implant? Do you have an audiologist who is knowledgeable and helpful about assistive hearing technology?

Nancy T.

Sometimes meds will cause hearing problems. My hearing loss (which was intermittent) and tinnitus was rectified by stopping Celexa.

Cherie

Nancy T
 

It has, for the past several years, and to some extent before that, been associated primarily, with my other neurological deficits/disorders....now diagnosed as MS.

One referral did feel it was due to a hereditary disease that would cause deafness and blindness...did no testing to support this, and NO relatives on either side lost hearing till quite old, and visual problems in family other than mine, are all due to aging eyes. The dr. that sent me to this person was really PO'd by the off the wall and unsubstantiated dx that took nothing below my neck into consideration

I have only had steroids twice, in o6, and I lost a tad bit more hearing then, and then have been on them now since November (tapering off) with no improvement in that regard.

I really don't know about the blood test, I have had a BAER which is abnormal.
I have never had tinnitus or dizziness though ...sounds as though it should go with AIED.

I know hearing impairment is not a typical MS symptom, but I was told degree of loss when it does occur can vary and mine has taken some time to get this bad with the major changes occuring, as in '05, with a nightmare episode /flair.

I was told no, that they weren't for my type of neurosenseral (sp?) loss, but I just did a quick search, and I don't see why not :confused: might ask again.

As for audiologists....so, so. I have $6,000.00 worth of computers in my ears, and have them adjusted real regularily. I also have amplifiers on 2 phones, a vibrating alarm clock, 2 weather alarm units, a dog who lets me know when there are people at the door. and a hubby who is used to "yelling" sweet nothings in my ear ;)

The point of this survey is that it is NOT regularly thought of as a MS symptom, but my neuro found some article (which I will try to get) that supports the theory that hearing loss can be associated with MS. It seems from what he read that this thinking may be changed around.

I think we should make sure our neuros know when or if we have ever had hearing problems.

I am wearing an aide in my ear of hearing loss that is believed to be from MS. There are no other explanations for my loss.

http://www.ncbi.nlm.nih.gov/pubmed/15732838

here is the article that my doctor found!

So I misunderstood what he said. This was one case. But he believes I may be also have had this for a first sx....

Hi Tante, thanks for the further info on your situation. What a bummer to have so much hearing loss.

So it really does sound like it's likely connected with your other symptoms and not a hereditary thing. (Don't you hate those off-the-wall, completely unsubstantiated diagnoses!!) I hope you don't have any further loss of your hearing. It must be frustrating to have this and not know the exact cause.

I feel very lucky that I only had the one-time loss and nothing since (in 9 years). I recently found out that my insurance WILL pay for a Baha (bone-anchored hearing prosthetic for single-sided deafness), so I'm really excited about that! (My speech discrimination in my bad ear is so bad that a conventional hearing aid won't help.)

My ABR was very abnormal on both sides but my right-side hearing remains perfect, thankfully.

Good luck to everyone suffering from hearing loss. It may be considered uncommon in MS, but uncommon doesn't mean nobody gets it! (Mine hasn't been attributed to anything definitively--most likely a vascular trauma from sneezing hard.)

Nancy T.

Hi Tante! I think it's a great idea for you to check back in with an ENT and audiologist and see if a cochlear implant or something else might help you.

I agree totally--thanks to Bird for starting this interesting thread!

Tante--please tell me about your "trigeminal neuropathy"? (Or maybe you did and I missed it...) I'm curious because I'm sure my trigeminal nerves are slightly whacked (0.000009 percent whacked). I've had funny, bilateral shocky and paresthesia sensations--and originally some excruciating painful jolts--on both sides of my face that follow the lines of the trigeminal nerve I've seen in diagrams (I saw, and immediately recognized, the diagrams AFTER having had the symptoms for weeks or months). But mainly now they're very minor and don't bother me.

Wonder if this is some sort of multiple cranial nerve problem? In fact the neurologist referred (in his notes--not to me, oh heavens, NOT TO ME) to my bad ABR as indicating "cranial neuropathy."

BAHA won't be too soon--my consult isn't until May 22. I'm sure the surgery will be even farther out. But I've been waiting 9 years, so I am happy to wait a bit longer!! :):):)

Nancy T.