angelbum 08/03/15
Last reply 3 years ago
15 to 20 years are you still walking ?

Wondered how many people are still walking without a stick or aid after 15 -20 years with ms ?

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gs960
3 years ago

I started on using elbow crutches after 6 years since I have been diagnosed.


cameron
3 years ago

Well, I’ve had MS since 2003 (and probably had it a couple of years before diagnosis) and don’t use a stick although I do wear an orthotic on both feet and have a leg splint. You can’t do anything about the course of the condition but you can maximise what you have by keeping very fit and addressing issues as they arise. A small price to pay for keeping mobile.


graham100
3 years ago

Hi Cameron. Which orthotic do you use? Has it got a name? I’m DX 3yrs. On crutches. Trying to keep fit but find it hard.


cameron
3 years ago

Hi @graham100, my struggle to keep mobile has taken me down many roads. Very fortunately, soon after dx I got to meet a neuro physio who set me on the right path. She identified the exact damage and gave me series of exercises over a number of years. It was through her that I got referred to the Functional Electric Stimulation clinic at Odstock Hospital, Salisbury. I was much better when on this: it’s not a one-stop process and it does require you to attend clinics, but it really helps with gait, balance and drop foot. Fast forward six years and although FES was still working for me, it hadn’t prevented serious damage to my knee, caused by the strain I’d subjected it to. I was on the verge of being referred to an orthopaedic surgeon, but the GP and physios were very concerned that an op could have a disastrous effect on the MS. The worry was that the months of immobility following surgery could weaken the legs permanently. The solution was a leg splint that encouraged normal movement of the knee. It’s called Dynamic Walk, it’s fairly new and it’s absolutely brilliant. It’s made of carbon steel and is weightless. You can see it on YouTube. Look up Fellauer Dynamic Walk. It’s been confirmed I now don’t need surgery: the knee is stabilised. I also wear an orthotic in each shoe to even up my stride. These are basically shaped insoles, very easy to wear. The shocking thing (IMO) is that you don’t get an automatic referral to an Orthotics Department or indeed to an FES clinic. You’ll likely need to press your GP for anything to happen. My physio did the pushing for me and even came with me to my hospital’s Orthotics Department to make sure I got proper attention! I know I’ve been lucky!


Anonymous
3 years ago

Yes angelbum, still walking, skiing, bicking after 18 years (diagnosed in 2012 but having MS for sure for 18 years after hepatitis B vaccination, first symptoms in 1996).

However, I hate running because it becomes difficult.

But no aid for the moment, no crutches for instance.

Eric.


reddivine
3 years ago

Well i PM’d you with my story already. Every one is different so don’t try and 2nd guess the future. ME = had it 20 years, fine-ish for 10 yrs, then went from 1 stick, then 2 sticks then a chair.
Its not the end of the world. Now i have a wheelchair ‘i go faster and further than i have IN 1O YEARS!!!! and i don’t get tired.


graham100
3 years ago

Thanks @cameron, that’s amazing, was the physio your brother/sister. Lol. Sounds like you was liked. You must be a nice guy, to get that level of treatment. My gp is a great guy we get on well. I will ask him as I’m suffering right leg F/drop. Knee pain sounds similar. Thanks for info.


Anonymous
3 years ago

@reddivine “Its not the end of the world”. For you maybe, for me, if I stop skiing or even swimming, is the end of world.

What you said is the more terrifying, disease sleeping for 20 years and waking up in an agressive mode. I don’t want to think about it. Don’t even want to have a reminder of this particularity of MS.


cameron
3 years ago

@graham100 – can I suggest that you first hunt down a really good physio with a neuro specialism. I went privately but it’s not that expensive. In my neck of the woods the NHS physios are so overstretched that they wouldn’t be able to spend the time (= hours) needed to sort out what’s going on in your legs/knees. To non-medical people like you and me, it can seem like the whole limb is bust, but a physio diagnoses what muscle groups are a) unaffected b) partially affected c) truly bust! You may be surprised at the outcome. That’s your starting block. Solutions depend wholly on that diagnosis. It may be that targeted exercises give you back some function, or you might be better off with FES and/or orthotics. Incidentally, don’t expect much but sympathy from your GP. Mine hadn’t even HEARD of FES, let alone how to refer me. The trick is to investigate all the options before going to see him: he’ll be impressed that you are an ‘expert patient’. My area has stopped all GP referrals for neuro physio (great, eh!) so there’s actually no choice – but at least if you’re paying the piper you stay in control!! Private physio here costs c.£35 a session: it’s the best money I’ve ever spent. xxx (PS – I’m actually female!! LOL)


graham100
3 years ago

hi @ericg. I have a friend who about 20yrs ago was DX. And given the MS label in queens london. Put on a trial. Over 3yrs. He’s still working and doing his martial arts. Lucky Ba—-d. Lol. (Luck of the draw)


Anonymous
3 years ago

hi @graham100. Exactly, and like you say in your About, taking life day by day is the best psychological treatment!


lorag
3 years ago

I have had MS for 20 years amd started using a crutch the last 4years and have a split on leg to help with foot drop. Took me couple of years to accept walkimg in shops made me worse and weaker then accepted its ok to ask for the scooters they provide because end of the day why struggle. It ta


angelbum
3 years ago

HI. @lorag could you private message me I have a couple of things I would like to ask you 🙂 I realise our time diffrence is very different with you being in Australia and me in Scotland x that is I hope to speak with you soon joy x


hasti18
3 years ago

Diagnosed 17 years ago which took 3 years. I’ve travelled the world, jumped out of a plane, walked the fells, held down a full time demanding job and only just started to have a slight issue this year. That is simply because I got over stressed in my work-changed the job and I’m better, walk 1mile to work unaided,….just a tad wobbly afterwards.


angelbum
3 years ago

Hi @hasti18 thanks very much fir this information it is very valuable in knowing how the disease progresses for everyone .

I realise we all have different severites of this illness but it’s very interesting hearing others story’s on how there ms has affected them .

Thanks for your reply I really appreciate it .

May I ask what your first symptoms were and what age did it start ?


angelbum
3 years ago

@hasti18 are you male or female ?


graham100
3 years ago

First symptom that I know about was optic nuritice. Age 53, they say I could” have had it a lot longer, not sure about that. (Male)


hasti18
3 years ago

Hello angel bum,
My names Sara and I first remember experiencing a tremor at the age if sixteen. But previously had horrendous headaches. The doctor advised me back then that it was growing issues and not too worry. I continued to have migraines over the years but thought it was down to my lifestyle, lots of socialising and shift work. Once I had a little drunken fall and a week later had some odd black spot in my vision which turned out to be optic neuritis and was found by my optician. Have the usual tests and here I am with a diagnosis. I do feel sorry for those who are walking around with possible ms symptoms and no diagnosis but again it’s so hard to determine. There is a huge relief when you have a diagnosis as your aware of what else it could have been.

I hope you find yourself coping, it really is, well for me it is, about how you handle this situation in your mind and having amazing people surrounding you if that’s possible.


angelbum
3 years ago

@hasti18 can you pm I would like to discuss a few things about the headaches with you . I’m off to sleep but perhaps tomorrow we could catch up .

Thank you all so much for your support and information . I got another appointment again with neurologist again . It might be a while to wait but I think I should be entitled to another mri to see if there is any change since last scan ! Also I think neurologists should listen to there’s patients more . After all we have the answers of what are body’s have experienced or still experiencing . I’m sick to death of fighting this illness on my own . It’s not a pretty thing to deal with . Scares me to death . Not only that I can’t get access to disease modifiers so continue to suffer every relapse on my own for weeks to months .arrrr


graham100
3 years ago

You are right that they should listen to us. But,, as the saying goes, you don’t get it till you’ve got it. So unless you find a nurologist that actually has MS. They won’t truly understand.


hasti18
3 years ago

Totally understand where your at angel bum, I still have fears that a doctor thinks I may have munchausens every time i go there. Feel free to pm, I’m off to work but will speak later on


angelbum
3 years ago

Yes basically this illness can make you look Luke you have hypochondriac or can look like depression and many other things . I know myself the array of symptoms can make you look like your off your head to the outsider or Dr . Most drs that treat ms don’t have ms untill you do ! The disease even puzzles me at times !

I remember when I took a relapse after my won was born . Guess what was told post natal depression when I felt severely unwell.

I don’t feel like I should need to basically prove my innocence of this illness when i have had clinically isolated event when I was in my teens and number of other attacks that followed then relapses each year ans a hell a lot of suffering .

My memory has been severely affected by the disease as well . Don’t these doctors know that one of the main symptoms is memory and conginitve decline.

Why would I keep going back time and time again if I was well .

I’m just at a loss . Just because when I was young I couldn’t describe to my doctors what I was experiencing . I found it very difficult to put into words and used to just cry cause I knew something was very wrong . Obviously when I was 15-21 I just had the attacks and cause the were short lived then perhaps a day or so . I just continued on with my life but when they changed to longer relapses the ones that last for 6-8 weeks and you can’t function and gets to stage you can’t move out of bed . Then you realise what the hell is this I’m dealing with .

You want to know why and what is causing it . You want to get better . So you start looking for help . Help that may come to late .


angelbum
3 years ago

Looking back also when in my teens must have been around 18-19 I also experienced what I know know is l hermittes . Think that may be wrong spelling . But I’m sure you all get me .

But because it basically lasted seconds I was like what was that ! Over prob a month I would get it around 3-4 a week but never really thought that much about it .

I mean it’s certainly a weird thing to experience but in no way I did I think it was a disease . In my teens I didn’t know what ms was …….

And now I only have my words that can say that I experienced it as I didn’t go to doctor about it . So basically it’s just another I unlogged relapse and it only my word now …..I’m so frustrated guys as you can tell . I’m sorry for the rant but it’s a long time to deal with this on my own .

It’s not only the disease I’m up against here it’s the constant trying to stick up for myself and explain . You know who’s interested in going back over my life of 20 years . Too much effort for any doctor to take time and listen .


reddivine
3 years ago

i never said using a chair was the “end o the world”!! Lord no, its given me back my independence. I take it on buses, trains, even went to Rhodes twice! The heat there makes you tireder faster..
I CAN walk but not far, so going anywhere takes planning – and help. I’d rather use my chair than fall over in a heap in a shop or such.


anawith1n
3 years ago

MS now for 16 years I dont use anything but I do loose the balance when I’m extremely tired. The orthotics sounds good I need to look into that. Now that winter is coming, I can wear them. Well I got MS at 31 yrs old I did suffer migraines for 10 years got that treated and out came out MS. I guess it got woken up when I was getting treated for migraines.


johnathanmac
3 years ago

Well I was diagnosed early 2013 from a nystagmus, then double vision and travelling numbness. I was hit hard with a relapse just as I started Avonex that sadly didn’t work so now I’m on Tecfidera but that relapse was weakness. That hit and stuck hard, weakness in my right side that has caused issues with an intermittent arm tremor. I used a stick, then to crutches, then to a singular crutch due to coordination issues with two. My wife bought me a cheap foldable wheelchair, I then got an old solid frame chair and then the NHS provided me with a custom Solid framed Quickie Argon2. So I went fast in to the chair but I was never afraid of it. I pushed to not use it hence my wife buying me one as I was stuck in the house most of the time.

Will I get better and not have to use the chair? Yeah of course I might but I plan the future based on what I am now so my holiday in September has all been arranged as wheelchair friendly as possible, I have a foldable stick in case they have crappy wheelchair access in Mexico and I have to get up for steps, bad paving, ect.

Yes I can walk, it is reminiscent of Bambi on ice but with less grace and it is so bloody slow. as @reddivine said The chair means I can whip around faster even than able bodies so it gives me my freedom & independence back in terms of getting out of the house and socialising. It’s also fun telling kids that I didn’t eat my vegetables at their age, when they ask why I’m in the chair. 😉


mdfishinggirl
3 years ago

Had first major relapse (full right side paralysis…while pregnant) 17 years ago, dx’ed 6 years later when it happened again. Other than relapses, which seem to always start with paralysis for me, I get around very well unaided. If I am on the treadmill or hiking and start to get too warm, I walk very poorly, stumbling all over the place. I guess anyone with MS that has sensitivity to heat would. I know we are all at different points of this disease, even if we have had it the same amount of time, and I can’t help but wonder when the “other shoe will drop” (literally) for me.


makkymee
3 years ago

Hi All,

I’m only 4.5 years into my MS journey but interestingly I attended the MSResearchDay in London yesterday and shared a table with a several people two of which were diagnosed 25 years ago:
– One of the MSers is in her mid 40s and uses a wheelchair constantly
– The other MSer who was in her mid 60s said she has been relatively relapse free although recently she has started to stumble slightly
Neither are taking any meds.

Keep well
Makky


keligal68
3 years ago

I was still working full-time and walking without any form of assistance for 20 years. An attack in my 21st year left me walking with a cane if I left the house some days depending on my level of fatigue. I guess what my storey tells is no two MS people are the same.

If I would have just given up my heathy attitude back when I was 25 and newly diagnosed my life would have been very different. I am now 47 and I still keep looking for ways to help live a full and happy life.

My newest goal is to find and share information about the use of a Balance Dog. I think the benefits of a well trained K-9 helper will benefit most people with mobility limitations. Once I find out more about this I will post on here.


tabbycat
3 years ago

The balance dog sounds fascinating . I have unbalance cats that keep,trying to trip me up!


keligal68
3 years ago

I know right!!!!! I have contacted the local chapter of the MS Society and they thought it was a great idea but had no info. I have started contacting service dog organizations but they are so busy that they are not taking new applicants right now. I have started contacting dog breeders in my area to do it on my own. Where I live (Edmonton, Alberta, Canada) You can’t get service dog accreditation if you train your own dog. I mentioned to the MS Society that a marriage between them and a Service Dog foundation would be awesome.

Kel


bryanhs
3 years ago

15 years in and have an L300 for foot drop, but other than that I don’t have too many problems.


graham100
3 years ago

Hi @brianHS. L300 looks good but don’t think I could afford it.

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