Multiple Sclerosis (MS) Support Group

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2 Online
2 Online

Deafness

I have had MS for 25 plus years with RRMS. I have been on many of the meds and have had mostly lesions on the brain. No trouble with motor skills. I still can run and do strenuous work. About a year ago I was taken off Tysabri (jc positive). I didn't like any of the alternative medications so I went off all meds and was trying alternative treatments. Just after new years, I was experiencing balance and control issues as well as a loud ringing in my ears. After a 2 week course of decongestants, my ENT doc saw no fluids in my ears and ordered an MRI. It came back with 5 lesions on my pons and brain stem as well as many throughout other areas of my brain. I am now nearly deaf in both ears as well as blind in my left eye. I have difficulty sleeping more than 2 hours at the time. My balance has improved some but is still not good. I am going to my neurologist tomorrow morning. I am a little frightened about my future.

Replies

mjideas
mjideas

Hi Dave. Sorry to read your news. I would be frightened too. Recently I have been experiencing dizziness and fullness in my ears that feels like sinus problems. I'm being sent back to an ENT for a 2nd time. 18 mths ago my MRI showed lesions in the brainstem, including the left pons. I am spms, wheelchair bound with lesions in brain, neck and thoracic - thus affecting my mobility most.

I have a couple thoughts. Some years ago when my balance started getting worse I kept asking my (too protective) neuro for a test to explain why. He did nothing so I researched and found the best test for this was something called 'auditory evoked potential' done by a neuro-otologist. (a rare specialty in neurology). The testing showed no vertigo, mild hearing loss and an MS lesion on the 8th cranial nerve. This is a nerve in the brain involved in hearing, balance and other things. So that identified the problem and nothing can be done as far as I know but I wanted to know what I am dealing with. Last year a lesion showed up in my brainstem (left pons and other). No one seems concerned except me.

I have high pitched ringing in my ears that varies but I have TMJ from a car accident thirty years ago. I also have lost hearing at the high tones beginning with when I saw that neuro-otologist (5 yrs ago). I have been given conflicting news about the hearing loss and MS. Only that I am too young to have any hearing problem,

I assume you have seen an audiologist. Mine told me if the tinnitus becomes really difficult they can make 'white noise hearing aids' to use when you need relief. But obviously your hearing and eyesight are the main concern. I would have hoped Tysabri would have been more protective of your brain.

You obviously need more information and treatment options. Like a neuro opthalmologist's opinion and someone in the hearing field

The most hopeful thing I read recently is an article about a biotech company making injectable stem cells that actually were shown to be curative, I had no idea we had come that far in the US. Unfortunately the FDA is interfering.

But the good news is there is brain/CNS/MS repair tools finally becoming available. It gives all of us some real hope-especially people like you and me who have had this so long and sustained accumulated damage.

D/S post:stem cells (next page by ezone)

link:

http://www.businessweek.com/articles/2013-01-03/stem-cell-showdown-celltex-vs-dot-the-fda

I hope you get more information and treatment options. My vision is good but both optic nerves are quite damaged as shown in a VEP years ago.

All the best,

Melanie
lorrieonline
lorrieonline

I'm sorry to hear this Dave. Please let us know what the neurologist has to say. I've just gone on LDN recently after not taking any MS drugs for a few years now. I've been reading that LDN may stop progression and actually help so I'm hopeful. I hope you get some answers. I'll keep you in my prayers.
lchoppel
lchoppel

It is good you are seeking early treatment of this problem, and not letting it go on. I wish you all the best at your neuro's appt. I'm sure he will send you on to an opthamologist for further exam of the eyes. Please, come back and let us know what was said/done for you. I wish you the best. To have MS for 25 years is enough, but to lose hearing, eye sight and balance all at once is horrible. Maybe your neuro will prescribe a burst of steroids and that will help your eye sight.
deleted_user
deleted_user

i started having eye problems about 5 years ago. the eye dr. said it was optic neuritis. i took a series of steriods for it. its either a little bit better or either i've just gotten used to it, i don't know. i haven't had any hearing issues yet, but i'm so scared that i'll wake up one morning and something will be wrong. (my ms problems seem to occur overnight.) i wish i had some helpful advice for you. i'm so sorry to hear about this. i hope you can get something done.
Squeemom2
Squeemom2

Dave, have they done a round of steroids yet? If you're RRMS, steroids *might* still help. I had brain steam involvement; double vision, no control over my eye movement, hearing loss in my right ear, facial paralysis and severe balance issues. I was treated with 3 days of IV solumedrol. The issues improved greatly over the course of about 6 weeks. I still have residual problems (ringing in my ear, trouble with loud noises, double vision when tired, mild vertigo) but I can function. Please don't lose hope yet, things may improve.
Squeemom2
Squeemom2

Just wondering how things are going Dave and what the neurologist said. Please give us an update when you have time.
DaveC
DaveC

My neurologist wants me back on Tysabri, pronto. My exacerbation is starting to fade somewhat. My extreme balance and coordination problems have passed. I can actually stand in the shower again unsupported. I still cannot hear voices or higher pitched sounds but I am aware of low frequency sounds. My vision may be getting worse. I have optic nerve pain behind both eyes. My legs are strong again.
I will stay on Tysabri for one year. Some risk involved with PML. JC positive and this will take me out to 4 years on Tysabri. At that point I will go on GB12.
Life just gets funer and funer. lol
deleted_user
deleted_user

As much as everything sucks for you, you really have a good attitude and that will help too! Hang in there and keep the faith. You can do it!