MS (Multiple Sclerosis) and Tinnitus — Nerve Damage

[mexigrl64]

I was diagnosed with MS 15 years ago. At that time I also had what they assumed was a relapse that caused hyperacusis. Orignally bilateral it is now right ear only and I manage it, rarely needing earplugs. Certain noises will always be an issue for me.

Along with that I've had tinnitus off/on but it's never been unbearable or loud enough to hear all the time. Recently my right ear has become quite loud. My regular GP has no idea what to do, and my neuro says it isn't MS (to be fair, she is not a specialist and I'm not in a good area for medical care or MS expertise). I live in Mississippi (southern) and can't find any specialists within a few hours range. I did called an audiologist who is listed on the ATA but she doesn't work with tinnitus unless it relates to hearing loss. I am setting up an appointment with my ENT but suspect he won't find anything.

I posted a message to the doctors corner but wondered what thoughts the support group might have. I'd have to suspect my T is coming from lesions on a nerve so nerve damage. It seems some treatments are better for people with various issues (blood pressure - lower sodium etc). Does anyone with nerve damage have things that have worked for them?

Thank you in advance for your thoughts!

 

[attheedgeofscience]

If I recall correctly, tinnitus develops in 4% of MS patients. And when it does, it usually develops prior to the main symptoms of MS. There are a couple of cases where MS patients who underwent stem cell therapy had their tinnitus symptoms disappear. Information on tinnitus and MS patients is generally difficult to track down; even more so for MS and stem cells. But the above is what I know (reliably).

Depending on the progression type of the MS disease, certain medications may be used (e.g. steroids) to manage flare-ups. Sometimes these drugs may (also) be the culprit behind tinnitus when used in high doses.

To the best of my knowledge, experimental stem cell treatments remain the only potential treatment option that has the ability to reverse symptoms of MS. All other conventional treatments aim to merely manage the symptoms/delay the disease progress. There may be clinical trials for new drugs in relation to MS that I am unaware of, however (it's been at least a year since I have done any basic investigations into MS).

The chart below - made by TRI - is an exhaustive list of causes and exams used to diagnose tinnitus. But even this chart does not mention MS, I believe. [Click on image to enlarge].

 

[Chelles]

With MS do you ever have middle ear spasms?

 

[mexigrl64]

Hi Chelles,

I've had ear spasms before, I'm not currently having them now. With M.S. you often have odd spasms and then usually they go away. It's definitely an odd disease with so many things that "can" happen that it's impossible to count them. That said, often people think they have M.S. because of a symptom but it's something else. Have you been diagnosed?

Barri

 

[1MW]

MS is probably the cause for T & H.My opinion 99% the cause is MS.
In MS when you feel decrease in hearing or T worsening or H onset you know the treatment ...
is pulse corticosteroids from the first time you feel the symptom
for some days to pass the attack with the lower damage in your hearing.
If you loose time maybe to late and damage is permanent.
Also some meds for MS can cause T.

It's important to know that you T & H cause is from MS because in acute event you must take pulse
corticosteroids you must not wait.
I have read stories that first symptom of ms was sudden hearing loss T & H .
Also most MS patients have some T and report that acute worsening improves with corticosteroids.
Don't believe doctors that they don't know the relation between MS & T & H these are very close related.

 

[mexigrl64]

Hi 1MW and thanks for the post. I do not react well to pulse steroids and seriously hope to avoid them. I have hypertension and an irregular heartbeat. Last time I was on steroids my neurologist and cardiologist had an argument about how much I really needed at one time ;-) Is there proof that pulse steroids help T and/or H? If you could point me in the direction of that info it would be helpful. I do NOT have a good neuro since I moved to MS (I know, the irony right?) from CT. I had an amazing audiologist back in CT too, but not here. I'm kind of on an island when it comes to healthcare.

Thanks

Barri