This is my first post on here although I have been popping in to this forum since diagnosed with rrms 4 years ago and it has been a huge help to me.
Basically after an episode of ringing in my ear which I have been having on and off for a while now, I totally lost the hearing in my right ear. I have been seen in audiology and had an mri of my ears yesterday. It has made me feel quite “woozie” and more wobbly than usual.
They have given ,me steroids but I don’t think they are the same as the ones given for an ms relapse.
I don’t know if this is related to ms or not. It seems it can happen but is rare.I was just wondering if anyone else has had anything similar. It’s correct term is Sensorineural hearing loss.
MS hearing loss is rare, it does happen, and I’ve had it too.
I went deaf in one ear in the course of a doozie of a relapse that was pulling all kinds of tricks. That was a very good value MRI: they wanted to check that there wasn’t something else going on in there to cause the hearing loss, and also to confirm that it was an MS relapse that was causing all my other troubles at the time. Unsurprisingly, MS was the culprit in all cases.
I started a 3 day course of IV steroids and, after the second day, the hearing came back. Came back, just like that, like magic. Never before or since have i had such a dramatic or sudden response to steroids. I wish all the other aspects of that relapse had cleared up as completely and as fast!
Hi, I have had ringing in my ears for over 40 years and never heard of anyone going deaf oweing to ms but I guess it could be possible. Or maybe you have an infection in your ear that has made you deaf and that could be the reason the steroids given to you are different… Just a possibility. Janet x
Hi I had my first MS symptoms in 1991, optic neuritis. Diagnosed with RRMS in 1999 after experiencing issues with heavy legs. I have experienced different relapses over the years including severe vertigo where I was constantly sick. I have tried 3 different DMDs, still classed as RRMS. In 2011 I had tinnitus then lost nearly all my hearing in my right ear. I also had other symptoms, could barely stand & fell over a lot. I didn’t have an MRI but was told by my neurologist I had a brain stem relapse & prescribed the usual high dose steroids for 5 days. My hearing more or
… hearing more or less back to normal only slightly affected. When I first called my MS nurse for advice about my hearing loss I was told it was very rare to lose your hearing with MS. I hope you recover soon. Annie ps had issues with initial post
I have been struggling with fatigue for a few months prior to this episode. I have also noticed some of my previous ms symptoms have occurred again in the last couple of weeks (tingly feet, burning right leg).
When I was initially diagnosed I was very “woozy” for many months and I have had that on and off ever since. Have had exercises from physio which helped. They told me I have a lesion on my cerebellum causing this.
Now I feel “woozy” when walking but also if I just turn my head or am just sitting in the chair. I have finished my steroids but no change to hearing so far.
A few nights ago I had difficulty standing up when I got out of bed and kept falling to my right side but this has not happened since.
I’m on rebif and have only had one relapse since diagnosis which wasn’t a major one.
I still feel this is all new to me and never really know what is caused by ms and what isn’t!
It’s lovely to hear from others with similar problems.
I don’t want to jump the gun, but maybe it’s worth considering changing your DMD to a more effective one?
It sounds to me (obviously non medical so feel free to ignore!) that this is a rather nasty relapse. And that could mean you might want to consider something that has a better relapse reduction rate.
You certainly sound like you are going through a tough time.
Although, feeling ‘woozy’ or other off balance type symptoms could be related to your ear problems (have you been referred to an ENT specialist, just in case? Not everything is MS!) or could be vertigo. In which case a physiotherapist might help.
I have been seen in audiology and had hearing tests. The lady said that often they are unable to find the cause of this type of hearing loss
The ent specialist prescribed steroids but I didn’t actually see them. I am also booked in to see someone to assess my balance.
I think it could either be a hearing problem causing my symptoms or it could be ms. Hopefully the mri (of my ears) will show something and I will find out soon
The mri of my ears was normal. I now have very slight hearing in my right ear so hopefully it may be coming back. I am feeling better than I was but still feel a bit light headed/unsteady at times and also very tired. Also still have the tinnitus and am super sensitive to loud noise and noisy environments.
The ms nurse thinks I may have had a virus which has triggered a relapse.
I am going back to Audiology the week after next to see the consultant and have the hearing tests done again. Hopefully by then it will have improved more.
So glad you’re feeling a bit better and your hearing has improved. Hopefully the tinnitus etc will be gone soon too. I haven’t had it since 2011 but do remember worrying at the time it may be a recurring symptom. I still don’t like loud noises but at least that’s mostly controllable. Annie x
