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-   -   advice on hearing loss with MS (https://www.neurotalk.org/multiple-sclerosis/105599-advice-hearing-loss-ms.html)

lindkaye 10-14-2009 02:01 AM

advice on hearing loss with MS
 
Hi there; Wondering if anyone with experience of hearing loss attributed to MS could give their experience. My background: 2004 they discovered lesions - and then I was diagnosed finally with MS in April 09. We are in a wait & see cycle now with no medication - being checked every 6 months with MRI. I also have RSD in knee after failed knee replacement and Ankylosing Spondylitis - form of Rheum Arthritis only in the spine. I have been noticing the past few months of my hearing going way down in both ears. Its to the point I cannot hear from one room to the other, hear tv without volume way up, ect. Went in and had hearing test done and I am at 30% hearing in both ears. The dr. stated he believed it was from the MS. He stated he did not believe my hearing would come back (not in a flare) and stated I should look into hearing aids.
If you have had hearing loss - did it ever come back with being from MS? This is my hope - but my husband is looking into the hearing aids for me. On top of it - his insurance does not cover them and I didn't realize how expensive they are! Besides the loss of hearing - I am having the loud humming noise in the ears from time to time. Please let me know of your experiences. I am getting so down - I am only 51 and having to walk with a cane or walker, and now hearing aids. I know there are people way off worse and I should be thankful for what I have - but the uphill battle is making me so depressed. Thanks.

TXBatman 10-14-2009 10:21 AM

I had sudden hearing loss in my left ear only as my first MS symptom. My hearing loss was apparently somewhat different than yours in that it went away very suddenly, and was "profound", meaning I lost more than 90dB of hearing in that ear. I also had very loud ringing in my ears. I went on oral prednisone within 24 hours of the loss and did a 1 week course with a 1 week taper off.

There was no change in my hearing for nearly 8 weeks. Approximately 8 weeks after it went away, I started getting some hearing back (only very high pitched sounds...the first sound I heard was myself whistling while I was in the shower). Over the next 6-8 weeks, I recovered all but about 10db of hearing (only remaining loss is in the lower pitched range). The only thing I did differently and I don't really know whether it had anything to do with recovering my hearing was that I started taking vitamin E tablets right before it started coming back.

I still have brief episodes from time to time where I have funky sounds in my ear, or where the tinnitus gets really bad, or where I get the "hum" and my hearing goes away a little. The longest any of them has lasted is about a day, and most are 5 minutes or less. I still have a screwed up sense of directional hearing (probably from the delay in nerve conduction in one ear), and the same sound heard through each ear sounds like a different pitch.

I would go see a neuro-otologist if you have one in your area. They can tell you if it is MS or something like Meniere's Disease causing the hearing loss. Good Luck! I know it is tough, but hang in there...

SallyC 10-14-2009 11:35 AM

So sorry, Lindkaye..:hug:

I did have a temporary loss, many years ago, that came back, about 90%. So, yes, some may be permanent.

I think an Health Ins. Co has a nerve, not covering a ligitimate hearing loss claim..Grrrr

I hope more hearing comes back for you..:hug:

Kitty 10-14-2009 11:48 AM

I have hearing loss in my left ear and constant ringing in both. I've gotten so used to it that I hardly notice it anymore. Mostly at night when it's quiet and I'm trying to go to sleep.

My Dad had unexplained hearing loss in his left ear, too. He was never dx with MS but looking back at some of the sx he complained of in his later years I'm convinced he had MS but was just never dx. It explains alot of his strange sx that I have now! He had diabetes and heart problems so I think most of his sx were attributed to that.....and old age.

He was told his hearing loss was nerve related and permanent. I'm seeing now just how he felt when he had to ask "what" repeatedly. :o

PolarExpress 10-14-2009 11:05 PM

I have hearing loss in both ears, and wear hearing aids in both ears, since shortly after my son was born 18 yrs ago. It's possible it was MS related, though it started long before my dx. If yours is MS related, it would pay to talk to your neuro about it, since it will be permanent if not addressed right away. Good luck!

Debbie D 10-16-2009 02:37 PM

Haven't had it checked yet, but I've noticed hearing loss in my left ear over the last year or so. I also have what I describe as an audiology test in one or the other ear occasionally. I guess I haven't had it checked yet because I don't want to know...but I would guess it's got something to do with MS.

KajunButterfly 10-18-2009 11:42 PM

I have 50% hearing loss in my left ear. I found this out b4 my "official" diagnosis in 2003. My Neuro says that it is from MS. I wear an in-the-ear canal aid and no one notices. I know wat you mean by the age thing...I was only 50 at the time I got my hearing aid but, I tossed my pride away and started wearing the aid...I found that to be much easier and less embarrasing than asking "whuh" all the time. I was getting pretty darn good at reading lips!

tkrik 10-22-2009 09:26 AM

I had hearing loss without realizing it. Long story short, I do a small amount of transcription work from home and use headphones with a volume switch on them. DDs would use them and turn it way down and would comment on that.

I ended up having a flare and doing the 3 days of IV 'roids. After that I used the headphones at a much lower volume. Since that time I notice that my hearing in my left ear fluctuates right along with my other symptoms.

It may be too early to tell if you will get it all back as you have only been experiencing it for a few months. I hope and pray that you will gain it all back.:hug:

Catch 10-22-2009 10:30 AM

LK, sorry to hear about your difficulties. Hearing loss is a big loss and I hope it turns out to be temporary. Unfortunately even temporary can last for a number of years.

I can relate to your feeling old, too. I just got the news of two new chronic problems maybe related to my MS. The one, a digestive problem which has plagued me already for a couple of years, I just found out is a chronic, incurable problem. That one has me feeling quite low, since the diet recommendations include switching to a mostly liquid &/or pureed diet. (Yum, pureed steak!) Like you I know there are those so much worse off. I only use a cane occasionally. I still have most of my hearing (I think there is a loss, but not bad enough to send me for testing yet). My vision is good.

I guess sometimes there are those things that just hit us harder than others and like all the other things about this crappy disease, we eventually find the silver lining, or a level of acceptance.

Of course, having to deal with an insurance company that won't pay for hearing aids doesn't help matters. What do they place their denial on? That the aids are unnecessary? Will they cover the old-fashioned horns they show in the old silent movies??? (Sorry, always trying to find the funny :o )


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