Hi, Just a question to get people’s situations etc, but how long have you remained without an aid or wheelchair? I know it’s a bit like how long is a piece of string but it’s interesting to know and understand some more. Thanks you :0)
It started with me sept 2010 and I’m still working but taking loads of pills and rebif It’s all different for all of us so as you said no one knows how long the string is Take care Bazza
i’ve been diagnosed for 6 years, occasionally use a stick.
walk like a zombie but still managing.
carole x
i started to use a w/c/scooter for out doors in 2010 i was diagnosed 1992,i can still manage to stand and walk about my home and garden.
hiya
diagnosed 2005-all well til july 2012 when huge relapse has left me requiring powerchair. cant walk unadied, can manage to 'furniture walk, no way can manage outside. BUT this is unusual/rare dont think it will happen to you!
ellie
Diagnosed March 2009, relapse March 2013 meant I had to start using a walking stick. My walking has improved a lot since last year but I do still need the stick because my balance is poor meaning my muscles have to work harder which then causes pain. I’m still improving and I’m determined to keep doing so. Mostly, I’m just glad I can still walk and it’s something I will never take for granted again. That’s the thing about MS - it does make me count my blessings for all the things I can still do.
Tracey
46 years!
OK, slightly facetious answer, as I was only diagnosed in 2010!
However, my neuro team are now beginning to accept I did have symptoms consistent with MS as long ago as my 20s (I’m now almost 48), and I’m beginning to wonder if it began even before that. At school, I could never do the simple PE excercises everyone else could do - catch/hit a ball, balance on a beam etc. I wasn’t a bad little runner - especially long distances - but anything involving balance, coordination etc - forget it!
One of the other mums down at the school gate commented to my mum that I didn’t walk properly. My mum, never having noticed it, was offended, rather than worried, and just thought: “What a damn cheek, finding fault with someone else’s child!”
But thinking about it, I think my walking has always been rather uncertain. I’ve NEVER been confident going up and down stairs without holding the handrail, for example. That is rather unusual for a child/young person.
So I now wonder if that lady might have spotted something nobody else had.
We can never know for sure, but I’m confident I’ve had MS much longer than I’ve been diagnosed, and possibly had signs since childhood. Even if we discount the childhood stuff as possibly unrelated, but accept the neuro’s view that there were things in my 20s, only recognisable with hindsight, we’re still talking decades I’ve remained “on my feet”.
Tina
Diagnosed March 2006 when I could still walk a reasonable distance at a reasonable speed. I was told my ms was mild. A couple of years later I bought a wheelchair for when I knew I wouldn’t be able to manage the distance and speed ie airports, shopping that sort of thing. I asked the neurologist about the same time if a wheelchair was inevitable, he said probably, but it could be twenty years away. Again he trotted out the word mild. I’m still on my feet, but only just, I lurch around at home on crutches, everywhere else I rely on wheelchair or mobility scooter. Like Anitra though, with the benefit of hindsight I had symptoms going back many years, I too was clumsier than most children, prone to falls and poor co-ordination, and I couldn’t run, my legs seemed to get tangled up at speed! My mum used to tell me to pick my feet up and to watch where I was going! So given I was diagnosed aged forty nine, I was on my feet more than fifty years!
Hi Anon!
Firstly, I count myself very, very lucky.
I was diagnosed in June 2013, following a major relapse that caused partial paralysis of my left side (June- Aug inc), however, apparently, I actually suffered four other ‘minor’ relapses dating back to my first in 1995.
Underwent first Alemtuzumab(Lemtrada) treatment in Sept 9-13th 2013.
I’m now back endurance running and completed a Half Marathon in March 2014. I’ve also just competed in Hope24 (10-11 May 2014) as a team member running over 24 hours (It was tough!). I’m also still a good club runner, running at 8-8.30 min/mile pace.
I feel more comfortable when running than when I’m walking. When walking, I’m very conscientous that my left side looks a little odd, but my Husband says, " You look fine!"
That said, there’s no question that my balance is crap. I also now suffer from Secondary Dystonia when I’m tired or fatigued. Thankfully, the episodes are relatively brief.
Tracyann
Interesting thread!
Like Tina, I believe my first “event” happened 22 years ago but was only dx 6 years ago.
My mobility is slowly becoming a “bit of a problem” but I’m still on my feet and working 30hrs/week (… long may it continue as I’m convinced keeping busy is helping). I’ve had my car converted to hand controls as my right leg is getting weaker. I’m still going to the gym but only using equipment I can hold on to for support as obviously my balance is shot! Sitting down for long periods of time doesn’t help - I have to spend several seconds uncurling, stretching and getting my balance … but if things stay at this level it’s not so bad!
I’m sure Tysabri is helping.
Emma x
12 years and counting (diagnosed when i was 30) - I’m one of the lucky ones. No medications but still walking and even dancing occasionally. My main symptom is truncal ataxia - also known as drunken sailor walk (I’m convinced that after dance class when my drunken weave is particular noticeable I’ll be getting into my car only to be stopped by police. The police station is just down the road from my class)
Like Tina I was always a accident prone child & I was famous in my family for my terrible hand-eye co-ordination. I don’t recall anything that could be related to MS before I was 27 and had my first experience of the dreaded pns and needles which I know have permanently.
Well thats my tuppence worth
JBK x
Hi, dx’d in 2000, now SPMS, mobile, working and carrying on with life nearly normal up until October 2013 and now having to get about outside in w/c only with OH, and indoors with a rollator. Still trying to come to terms with immobility as movement is something we take for granted. This disease is wicked but everyone is different and I never thought I would end up like this but acceptance and adaptability are things I now have to learn! Linda x
Had MS over 20 years now. Walking has been getting worse last few years. Bought stick in 2010 and used occasionally but use it most of time now since mid 2013. Bought scooter last year to let me go on long walks with family but still walking around with good days and bad days.
Hi,dx 6years but sure I have had it since I was about 30 when I had numbness in leg and fatigue which I put down to running after my 3 girls. Looking back I have had numbness off and on till about 10 years ago when my left leg started dragging. Now can’t move my left foot, I have weakness in my left hand, walk with a stick and I am trying to pluck up courage to " come out" with my rollator. I am like you Linda, trying to accept that this is way life is and hoping it doesn’t get worse as I am hanging on to work by the skin of my teeth. Magsx
diagnosed in 1996 with symptons evident for at least 10 years before - contiously ‘on my feet +working’. However currently in the middle of an attack of ON, which is horrible. It started in January, tomorrow due for hospital appointment…
Diagnosed in 2000. MS ruined my knees as they don’t track properly and I have very little meniscus left. I use a stick because I have osteoarthritis that came from MS.
If I didn’t have this, then I’d be fully mobile, which would be nice. I’d like to be able to bend my knees and skip downstairs - but my neighbours who also have ‘rodillas jodidas’ have to walk downstairs one at a time too and use a stick from time to time.
I feel I have been very, very lucky though. It can be hard work staying strong and I’ve always exercised as I find it helps with energy. We are all different however.
If my neuro offered Lemtrada, I’d accept without a second thought. I’m a musician who still works and I’d really like a bit more insurance against possible relapses.
Diagnosed: 2000 Walking stick: 2006 Left work: 2008 Rollator: 2009 Last drove a car: 2010 Full time w/c user: 2010 Home carer: 2013 Epilepsy: 2014
Hi I was diagnosed at the end of last year, My first attack was June which was a big one, I lost complete feeling in both my feet. I used a wheel chair for a couple of months until I got nearly 100% of my feeling back, now I use walking stick most days as my walking is extremely poor. I still lose the feeling in my feet on a daily basis but it does come back after a little while. Polly x
I just want to add I know of people who have been diagnosed thirty years and have never used a wheelchair. Try not to worry too much about what might happen because it might not.
I’ve always wanted to ask the same question but have always been afraid of the answers. I consider myself very lucky so far, I’ve had ms for 18 years and up until 18 months ago I was walking with no aids, since then I have declined somewhat and now walk with a stick outside but I’m fine inside although wobblerly at times!