Last reply 5 years ago
A question about disability..

Right, a bit of an insensitive question and I am sorry to ask this but curiosity has got the better of me.

I got diagnosed in March 2012 with highly active RRMS and got put straight on Tysabri. I’m certain my first relapse was Spring 2010.

As far as walking etc goes, you would never know anything was wrong with me right now. When people find out about my diagnosis they are deeply shocked.

I know its different for everyone but I think about it a lot and I just want some sort of idea…

How much time passed for you from diagnosis to wheelchair?

I know treatments are getting developed all the time and it will surely change the disease course for future suffers, I’m just curious.

I guess I’m trying to picture my life in the future.

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Anonymous
5 years ago

My first relapse was in 1989. I am still walking 24 years later.


Lillylilly
5 years ago

Hiya Moshy.
Not everyone ends up in a wheelchair. At diagnosis (2 yrs ago) my MS support worker gave a small percentage of people with MS end up needing wheelchairs, but it tends to be in the later years (50+).
As you know, everyone’s symptoms are different. Some people have more sensory issues and never suffer with their legs.


stumbler
5 years ago

My first episode was 1985/6. I had some bad relapses late 90’s and early ’00’s. I acquired my wheelchair in 2011. It sits in the garage or in the car most of the time, as I manage with my two sticks (the first acquired late 90s, the second, 2008/9.
But, that’s just my progression.
MS is a manageable condition. If I’d known then what I know now, I’d probably be in a better situation.
In a way, it’s probably better to develop MS now, although ideally it would be better to avoid it all together! 🙂


femke
5 years ago

Hi moshy how are you ?
If you really want to know my progressin I’m happy to tell you but I think my circumstances are so different to yours I’m scared it will give you the wrong impression as to what to expect for yourself !
I am wheelchair bound and my dx was five years ago but I am classed as being old for getting ms so it’s all different but feel free to ask me any question you like !
By the way I have a great full and happy life ! All the best femke xxx


Anonymous
5 years ago

hey Moshy,

I was diagnosed about a year ago and i too have been questioning my future as i would guess most people in our situations would be doing. In the year since diagnosis i have had major relapse which causes me to walk a little funny right now, to say the least. I play the guessing game everyday of when will things really start to change and I have to say it took me finding this website and talking to the few people i have to really make me see that you can’t keep playing the guessing game. The best advice i can give is don’t prepare for “when” prepare for “now” . I woke up one day and my leg was not working properly no way to prepare for that. Keep your chin up and if you every want to just chat i am just a click away. Take care fellow MSers


Gav
5 years ago

@moshy Like most people have said above, its completely variable. I was diagnosed a little over five years ago with highly active relapsing remitting MS and I started using a wheelchair six months later after a particularly big relapse just before I started my DMDs, the irony.

I didn’t use my chair all the time once I got out of hospital, I was determined to get back on my feet and I did, without crutches 🙂 Now I may not have not been so lucky with my recovery and not bounced back so fully or I could have just decided to give up and not try to get out of my chair, but that’s not me. Since then there have been times I’ve needed to use my chair more than I would like, but there have also been lots of times when I don’t use it too. I’m currently getting about mainly on my crutches with designs to getting back to my slightly wobbly walking unaided.

So I guess I just have one question for you, are you prepared to work as hard as you can to stop using a wheelchair if you need to one day?


baldheadedwoman
5 years ago

Hi Moshy

MS is such a varying disease and affects so many people in different ways, it’s impossible to map ourselves on other peoples experiences. There really isn’t a typical path.

Please don’t look at the wheelchair as the end point though, I have been confined to mine for the past five years and I can promise you it hasn’t stopped me living my life to the full. I still work – in fact I am currently working two jobs (for variation) and have just returned from a fantastic family holiday in Kenya, where I still enjoy scuba diving, swimming and dancing! My legs ‘fell asleep’ one by one. The right one only a year after my official diagnosis but I continued to walk with crutches until the left followed suit two years later. My path to diagnosis took over five years though, so the timing is sketchy.

I have a friend who has been diagnosed for thirty years and is only ‘bothered’ by fatigue.

None of us has a crystal ball, or the power to change the future. But if I did, the cure would be out there for us all.

Live well, laugh often, love much. BHW x


danrb80
5 years ago

@moshy everyone is different I was diagnosed in May 2012 and used a wheelchair once in August not due to legs but due to MS hug and chest infection. Time will tell with it all but the figures are more towards the no chair angle. 🙂


moshy
5 years ago

Thank you for all your input.

I guess baldheadedwoman got it right in that I’m kinda seeing a wheelchair as ‘the end’ when I shouldn’t really.
I know I need to shift my attitude in that a wheelchair is a tool to help you continue life as normal, not this… restraint or burden that I keep imagining it to be.

I guess maybe its the point of life that I’m at – 24 preparing to move out from my family home,good career etc. I’m seeking independence and I definitely feel like my diagnosis is threatening it all.

Every time I see someone in a wheelchair in the street I stare at them like some sort of nutter because I can’t help but wonder if I’m looking at a mirror of myself in the future.

I know I can’t keep dwelling on ‘might happens’ though. I can’t live my current life in a speculative future. I know this.

I just can’t help it!


stumbler
5 years ago

@moshy, there’s no certainties in life for anyone!
You’re probably more prepared for the future than other people. You know that you need to take care of yourself to manage this condition. And, it’s a condition that can be managed.
So, get on with your life, trying to avoid worry/stress, known antagonizers of MS.


mrshawk
5 years ago

Hi Moshy!

I was diagnosed last summer and am on Copaxone now. They are certain i have had MS for 4 years and i have leisons in my neck and in my brain… i have only sensory symptoms at this point (aches, tingles, etc.) Just remember that although it affects everyone differently the disease does not generally rapidly progress and although you may need assistance as you get older you still get to live your life. Also it is only about 25% of people who end up needing a wheelchair and often it is later in life (not always as there are no hard and fast rules with MS but those tend to be the trends) And these studies are dont without any MS drugs… Take Care of yourself and be ready to roll with the punches… just remember you are so not alone… i am the same way as you i feel crazy everytime i see someone with a cane/walker/wheelchair i stare and want to run the other way (they are perfectly happy- i am admittedly the crazy one lol)try to remember that you have a full life ahead of you. I was diagnosed at 24 years old too and was just married and wanting to have a child… talk about getting thrown a curveball… You will still move out and still thrive in your career… just take care of yourself and realize this isnt a sprint but a marathon and you will do fine!! 🙂


msue62
5 years ago

Dear Moshy
I feel the same uncertainty as you. It’s a difficult situation when you literally have no idea what is going to happen. Sometimes I feel positive sometimes negative.
Join the group at least we have got one. X


smallfry
5 years ago

i have never been in a wheel chair! i have had MS since i was 15 maybe sooner than that… but just got diagnosed a year ago! and people who don’t know have it and find out they are shocked! not enough people are educated on MS! that is why starting now i am getting active in stuff!


smallfry
5 years ago

oh….. i am 32 going om 33 here in 4 days! so its been a while!


reddivine
5 years ago

Moshy, it absolutely is different for everyone. I was diagnosed in the mid 90’s and was quite active till 2006, when I had another fall. Now (2013) I have finally got a wheelchair, NOT because I need it 24/7, but because I get really, really tired walking more than short distances. The brain still wants to go shopping, the legs say “forget it kiddo”.
I get it, your 24, you feel like life is over…but honestly? you just gotta take each day as it comes. Go ahead, move out, work, play live life to the full and just adapt to your changing health as and when.

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