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NEW and not so bad

I am new to the forum received a diagnosis of RRMS on 2nd march. I count myself very lucky as I was admitted to hospital on 28th feb after I took myself to A&E and it took three days to get a diagnosis. Prior to this I had an episode of bells palsy (left side) and a few months later complete hearing loss in left ear. Hearing has returned but some degree of hearing impairment continues. ENT consultant requested an MRI following this and this showed inflammatory changes but I was advised not to be concerned (little did I know) In Feb this year I had episode of numbness in back of head I went to A&E and was told it was a trapped nerve. The numbness then proceeded to travel down my arm and into leg to the extent that I was unable to write and also walk properly. It was this that prompted diagnosis. I know I sound smug but my neurologist is excellent and my MS nurses are even better.

I have already commenced avonex and I am considering a phased return to work shortly. My main problem is fatigue but I complained of being tired for years but put it down to working and having 3 young children. At least now I have a reason for resting during the day. The reason I say I am not so bad is because I work in cancer care and see some bad cases however I would never compare my feelings to those of somebody else.

I enjoy reading comments in the forum and I believe the users have probably helped me come to terms with all this so well.

Missyone

Hi Missyone, welcome to the boards. It’s a funny thing really, so many people spend ages getting a dx and it is awful, but also I think it must be awful to get such a quick dx! Sort of ‘out of the blue’, although I suppose you must have had some idea… and yes there are much worse things than MS to be dx with as you know only too well from your work.

Fatigue is also my main problem and I’ve no idea how on earth you manage with three young children. I’m 58 and live alone… so much much easier for me. Rest whenever you can and remember to ‘lower you standards’ when it comes to housework. More important to get your rest and spend time with your kids than live in a tidy house.

Take care and I really hope you manage to get back to work soon,

Pat x

Hi Missyone You seem to be coping well with your diagnosis tho Im sure it took a while to get your head around it all, especially as your diagnosis was so speedy. One thing struck me reading your post, and that was your hearing loss. I too lost the hearing permanently in both my ears 3 years ago, I now have a cochlear implant but things are still fairly difficult as I also have really bad balance and I always felt that my eyes had been affected too. Now Im having more strange symptoms, pins + needles on one side of my face and cold water sensations on my arms. I just wondered what your Dr’s felt with regard to the hearing loss in relation to ms, as i have read it can be a symptom albeit a rare one! Take care Gogirl

Thanks for the replies Pat my standards were never that high when it came to housework unfortunately. The kids arent so bad but at least in september they will all be at school so that will be easier. I do rest when I can and my husband is really good about things now that he has got his head around things. It was probably harder for him than me.

Gogirl at the time of hearing loss the ENT consultant felt it was a viral problem all linked to the bells palsy and also a history of hearing loss in family. But I just woke up up one morning and could not hear. The neurologist feels that these were all relapses and my MRIs would support this, hence why I was placed on DMDs so quickly.

I know I sound flippant but that is me and probably the way I cope with things but I do fear the future and what may come but for now I will just enjoy what I have.

Missyone xx

I lost most hearing in my right ear a few years ago. It was in the middle of a flurry of back-to-back relapses (the trusty Avonex had finally stopped working) and so MS was suspected as there was so much else going on as well. I had resisted steroids, but was in such a lot of trouble that I decided o sod it and started IV steroids. In the middle of the first night after day 1 I woke up and suddenly could hear in my right ear. It was just magic. Never before or since have I had such an instant and complete response. The MRI confirmed that the hearing loss had, indeed, been an MS lesion. The neurologist said is was rare, but there does seem to be a lot of it about!

Alison

x

I didn’t realise hearing loss was also linked to MS…as well as loss of sight :frowning:

Sorry, hi missyone and welcome.

I’m just a bit gobsmacked by it all really.

I am not dx. Had one MS attack about 3 months ago and an MRI showed one lesion in the exact area to be causing the symptoms I had. I am about 90/95% recovered now. Just slight weakness in left leg and minor balance problems and a litle bit of pins and needles in my left hand and left foot but all is good. So much better than a couple of months ago, I couldn’t even walk or wash! Was terrible.

I am a single parent but my kids are older than yours. I don’t know how I would cope with pre-schoolers!

My first bout of hearing loss was put down to labrynthitis, but when my other ear was affected 2 months later i was put on steroid tablets and carbogen which i think was a mix of oxygen and carbon dioxide, but nothing brought the hearing back, it just continued to deteriorate. I have suffered in the past from bouts of Iritis but went back to my GP in Feb cos i felt my eyesight was a bit weird. An optician had given me the all clear vision wise, but it was more to do with perception, the only way i could explain it to my Dr was it seemed there was a delay between what my eyes are seeing and how my brain is processing it! But then i started to doubt myself and think maybe it was a balance problem, cos apparently my vestibular nerve was v badly damaged during the hearing loss and my balace is v poor, i cant walk or drive in the dark at all. Anyway im now waiting to see an opthamaologist, but does the vision thing sound familiar to anyone? Thanx Gogirl

I had Labyrinthitis about 2 years ago. Was absolutley awful. I couldn’t walk, or stand even, due to the severe imbalance and couldn’t stop being sick. I recovered a few weeks later only to have it come back again 6 weeks later and just as severe! I suffered a partial hearing loss and was sent for hearing tests when my hearing was still not back to normal months later. Tests showed my hearing for my age (then 38) was normal. I didn’t think it was normal for me but I think my hearing has returned to normal now…unless I have just got used to it maybe? I hear fine now anyway.

Strange how it seems there are a few people with MS who have also suffered from Labyrinthitis. I wonder if there is a link?

My neuro thought that my two previous bouts of Labyrinthitis were possibly MS attacks but it turns out not to be the case as I only have the one lesion which was caused by the attack (my first and only attack) 3 months or so ago.

Hi Midnightmoon Oh how awful is Labrynthitis, I cudnt get off the bathroom floor I was so ill and unbalanced tho with every drop in my hearing that would happen. Im 39 now but was only 35 when the hearing problems started, I didnt even know it was possible to lose your hearing! For the first 6 months i totally believed it could be fixed, it was only when the Dr’s started to talk about the ‘worst case scenario’ that the penny dropped with me and panic set in. I actually had 1 gp in my practise tell me that going deaf was no big deal and that it happened to everyone eventually, it was just happening to me 30 years earlier than it should!!! Glad your hearing has returned to normal, but yeah its definately strange that some people with ms suffer from labrynthitis or similar illnesses. So little is known about the inner ear and even when I was sent to physio for help with my balance issues, the physio told me she would have to ‘google’ it all first!! I can kinda laugh bout it now but at the time it was horrendous. The impact on me and my family (hubby, 2 kids now 12 + 10) has been massive and although i have the cochlear implant I still need subtitles and cant use the phone. Being out of the house where i cant control the background noise makes me anxious and is highly stressful! I know that one of my ENT Dr’s suspects something like ms, but I guess only time will tell. Thanks for your posts, really good to compare notes with someone who is around my age and has experienced similar stuff. Gogirl