Afternoon, Just wondering how long you have had ms for and how long did it take until you needed somesort of waking aid on a permanent basis or every now and then? I know there is no average etc etc but would be nice to hear stories from other people and to give somesort of insight into the coming years with ms.
You’ve said it yourself - an average is really not useful. Reading other people’s stories won’t give you any insight at all into what’s in store for you, because they are not you. If someone says they were in a wheelchair within a year (and I know we have some here for whom that is true), it doesn’t mean that will happen to you. Equally, if someone says they’ve had it 20 years, but still don’t use a stick, I’m sure we have some of those too - but that won’t help you know if you’re going to be one of them.
Seriously, it’s a futile question. Try to take each day as it comes, and not by comparison with what has happened to others, as that says nothing about your own prospects.
Tina
hiya
tina sums it up well and i agree. telling u my story would make no difference to YOU.
one day at a time-thats best suggestion i can give-no-one knows what tomorrow will bring. and when it arrives u will find ur way of coping/dealing/living with it.
ellie x
I totally agree with Tina, I’m a likely PPMS’er but I could have mild RR with secondary or just really long relapses… it certainly is in no way what other people had told me MS was like.
There’s no way to tell when you;ll need help or how well you’ll recover from relapses. Keep your chin up and like Ellie says, one day at a time
Sonia x
Totally agree with Tina
Been in this relapse 8 mths now and still have mild symptons, but if someone had of told me 4 mths ago id recover to how i am now ,i would of never believed them !
I spent months worrying about what if ? and still do occasionally,…but i went back to work and just try to carry on …what will be ,will be
live for today
Gray
Hi, I’m sorry no one has answered your question. I can’t comment really as I’ve only been diagnosed a year so it’s a bit early for me to give you my story. Hopefully someone will come along and give you their story. Yes it’s true that you can’t compare yourself to others with this disease but I also think it would be nice to hear some other stories instead of being told constantly to live for the day. I myself would be interested to hear what others have to say xx
I am told my ms is mild at the moment.
I was diagnosed 8 years ago but i know my ms goes back at least 14 years.
I am on rebif. I do not use any walking aids at all yet.
I do agree with what the others have said but i can also see you were just asking for personal experience
Teresa.x
hi to anon above
i understood the original question but my reason for not telling is to avoid saying negative stuff to the original poster. very few folk have got into the place i am in such a short period of time. i have just been unlucky but i treasure each day as i said.
when i was well enough i met folk from all over-here and abroad but theres no way i can do that now. i met several folk in person from these boards and they wouldnt recognise me now! my original answer was based on what i have learned and how to cope and i still say do it now/today when u can, no-one knows what the future will bring.
ellie
I agree with all of the above too. I was diagnosed with ‘mild’ RRMS in 2010 but have has it for 30 years. Only ever had 3 relapses, no meds, no walking aids and still in full time work. Tomorrow…who knows? One life, live it and blinking well enjoy it too! We’re a long time dead (as my mother used to say!!). Have another glass hic of wine hic!
Had MS since 1998 and used a walking stick & FES device / foot-up brace full time for the last 3 years.
Wonder how much worse things might’ve been if I hadn’t been so active before MS ??
Dom
Diagnosed only few years ago but know have had mild ms for at least 30 yrs, no massive relapses, no meds and no walking aids, prob spms by now but live round the very subtle deterioration which at age 56 is pretty good going, I keep my fingers crossed, meditate and try to live for the day x
Diagnosed august this year, now use a walking stick for balance problems x
Hi Anon, I started to use my stick when i felt unsafe.
I use my stick mostly to stop me falling over when I am unbalanced. When I walk i get very tired its hard pushing a leg constantly in spasms so I use my stick.
Overtime I now use my wheelchair when in the shops because I find it such hard work to walk through aisles and noise and lights and it puts me in an unsafe place.
I am not paralysed I can walk, but when i am out my brain has so much extra to do to keep me safe, that its easier for me to use aids.
I know people with MS who have had it 30 years and never use aids and I know people who have just been diagnosed with MS and use aids.
Some of it also comes from the perception of peoples mind what MS does to us.
Its actually a neurolgoical disorder which can go slow or fast. Like others have said it affects everyone differently. Actually to be honest I dont even think the majority of the neurolgists understand it.
All I can say to you is this. Keep walking and doing normal things, dont let your MS be in charge of your destiny, you be in charge of it.
You will know when the time is there to use aids, I hope it will be a long time away for you, but if it isnt, its no biggy its just an aid to keep you safe.
IF you stop walking you loose your legs. The worse thing for people with MS is not the actual neurolgoical problems associated with it, but the loss of muscle tone, when we stop walking as we find it so hard and tiring to do so.
I am old now so I allow myself the luxury of an aid, but in the house i never use one.
Hi I don’t have an ms Dx yet but one neuro thinks I might have had a benign form since 1990. Anyway I am not badly effected at all except that I have spasticity in my calf muscle and quad on right leg only. Walking is a problem although I am not as bad as I look. No real bladder or bowel issue, no numbness vision issues . I don’t use a stick but I think I should a lady pushing a walking trolley overtook me today. MOYNA xxx
Hello,
I have been diagnosed for 2 and a half years. I don’t use any walking aids, but do use other aids such as a catheter.
But walking/ fitness wise iam very much my normal-self.
Darren
Diagnosed for 12 years - very minimal disability so far - no aids needed - some of us are lucky, some of us aren’t!
For every person whose disease has taken a benign course for decades, you will have another who has been less lucky. The good news from both camps is that most people learn to deal with whatever sort of luck comes along.
Alison
I’be been diagnosed since october & in pain since january, cosistantly in my right arm & hand. I wasn’t very active before this & have a desk job too, so if I wasnt sat at home or sitting in my car I was sat at my desk but always constantly dizzy…
Since having my drivers licence revoked due to my medication & symptoms, I’ve had to find out about bus routes etc. On being forced to get off my butt & walk to bus stops & stand at bus stops, I have had to find out the hard way that I get severe lower back pain on walking & standing for longer than 5 minutes. I’ve also now found thatmy legs are wobbly & my knees often give way unexpectdly. My lovely mum bought me a walking stick from a charity shop but on trying to use it, which I can only do with my left hand, I don’t know what’s more wobbly - me or the stick lol
I have yet to see an MS nurse but I do have an appointment over Christmas to see an MS Neurologist (can’t wait) so I’m guessing when I see them, I can inform them of these new problems & be advisd what to do… I have so many questions!
Pip
Hiya
I will have been diagnosed for 8 years this coming January. When I was diagnosed I was told I had very severe and very active RRMS. Since then I’ve been up and down, although the relapses are under control due to the various treatments I’ve had. I sometimes use a crutch to help with my balance but most of the time I don’t, just because I’m a stubborn madam! I am wobbly most days but I can cope with that, the thing I hate most is the cognitive issues I have which really frustrate me.
Sue
Was diagnosed originally with RRMS, was permanantly using a stick atfer 4 years and in a wheelshair after 6 (diagonsed changed to SPMS by this point).