coolfool 06/02/18
Last reply 5 months ago
Hearing loss and M.S.

Hi, I’m new here and this is my first post!
I’ve had M.S. for over 20 years, but within the last 6 months,
for the first time, I have suffered hearing loss due to M.S. ( to the point
where I have been prescribed hearing aids)
I now get periods of numbness in my ears off and on
and I’m worried that when the numbness is present is when the damage is being done, ie making me deaf
Does anyone know anything about deafness and M.S, or the role of numbness?
Thanks!

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stumbler
5 months ago

Hi @coolfool and welcome.

Hearing problems are not a common problem in MS. Have a read of this, in particular the last paragraph regarding eliminating other causes :-

https://www.mstrust.org.uk/a-z/hearing-problems


coolfool
5 months ago

Thanks for the very interesting link.
Unfortunately for me, my hearing loss is definitely due to nerve damage caused by M.S. ( so I’ve been told)


stumbler
5 months ago

@coolfool , far be it for me to suggest that a second opinion might be justified.

However, it is sometimes too easy just to blame everything on our MS. I assume that specific MRI analysis has been seen to back up this diagnosis?


coolfool
5 months ago

MRI and audiology report


elena-zein
5 months ago

im sorry for whatever your going through, i was born with mild hearing loss, and i have found out that i have MS, my doctor told me that theses two things are linked
i hope you find answers, and hope you feel better very soon.


ms-man
5 months ago

I can sympathize with your problems and wish i had the answers for you, I am having a hellish time with hearing and iv got some specialists saying MS does not cause deafness and others are saying it can cause deafness,I cant get hearing aids on NHS in my area, I recently had a home visit from a hearing test company and got to try a hearing aid and it made a difference to me but i unfortunately i could not afford to buy a hearing aid, its that bad for me I avoid everyone as its caused lots of problems communicating understanding people etc, I suffer numbness myself, Sorry I am not much of a help to you but hope you can find answers and improve and if i found some answers myself I would tell you


stumbler
5 months ago

@coolfool , I would assume that the audiology report was the result of a referral to an audiology specialist. I just get concerned when Neurologists avoid calling in other specialists, where necessary.

I’m not medical and have no medical background, but reading related factsheets, like :-

https://www.mssociety.org.uk/sites/default/files/Hearing%20Problems%20web.pdf

suggest that all avenues should be explored before just accepting this kind of life-changing problem.


coolfool
5 months ago

Thank you everyone for your very kind replies (I don’t know how to respond individually!)
Thank you, elena-Zein , for your lovely reply.
M.S. man, what a nightmare to go through! I can’t believe the way you are being treated! May I ask you, do you find that your deafness worsens after episodes of numbness in the ears? ( I’m not talking about when you suddenly go complete deaf, although I’ve had that too)
I’ve read that some people are offered steroids during a hearing loss episode, during my last one, I was advised it would have to be proven that the hearing loss was because af m.s. before steroids were prescribed.
I had an mri and hearing tests. The audiologist said I was too young for such deafness and that there was nerve damage and it was permanent.
I’m so sorry you are being refused the treatment you deserve and I hope things get sorted out for you.
Thank you again, stumbler for your info, I totally agree that far too often M.S. is blamed first for every symptom, I suffered from what turned out to be a frozen shoulder for so long after being told my pain was m.s. related. It seems to happen a lot.


ms-man
5 months ago

@coolfool its hard to say for sure as iv pretty much isolated myself from everyone as a result but when i have to deal with people which is not often its a problem for me but i get a lot of random numbness, I hope things can work out for you and that there is some kind of hope for you.


coolfool
5 months ago

I truly sympathise, m.s. man. I don’t understand though, why have you not been given any help for your deafness even if they don’t believe m.s. causes hearing loss?
Are they suggesting you’re making it up”? Seems very cruel to me, have you thought about getting the m.s, society to step in and help? I’m very vexed for you it’s just not right


ms-man
5 months ago

@coolfool , I think a lot of specialists have doubted just about everything Iv ever told them even the MS i never knew I had before an MRI proved them all wrong,the private hearing company I had out at my home sent the test results to my doctor and iv pleaded again for help so I hope they possibly can, thanks for mentioning the MS Society I never really thought about that for an idea, I hope and wish for 100% better luck with your hearing and for your numbness to vanish forever


coolfool
5 months ago

It sounds like you’ve had such a terrible time, I really hope things look up for you soon. I would definitely get in touch with the ms society though, I’m sure they’ll help. Let me know how you get on please.

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