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Not able to walk. Getting frustrated!

Hi everyone,

i was diagnosed with Rams in 2001 (on the day of 9/11) so not going to forget that!!

since the beginning of this year I have been unable to walk, up until then I was walking with crutches. I have heard of people not being able to walk for a year and then being able to walk again. I’m hopping that happens to me.

has anyone else suffered this? I have ppms, was diagnosed last year.

It is really starting to get to me. I cry most days. I have nerve pain down my left arm, arm,shoulder and back, I’m on meds for pain which work but make my muscles weak!!

Am I the only one going through this?

sorry to moan

Julie x

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Julie

I have PPMS and my walking has got worse, have sent away for some Biotin,as this seemingly helps with walking if you want i can message you regarding progress , afraid only thing i can think of.

take care

trish

Hello Julie.

I have seen my walking deteriorate over the last 30 years. Even with PPMS, there have been good and bad days. My job as a primary school teacher involved lots of time on my feet but the neuropathic pains made standing and moving very uncomfortable. My regular physio sessions have definitely helped and I am able to meet other people with my condition which is a real bonus with helping to take stock and come to terms with my condition.

Your walking my well return to some extent so please don’t give up on it. Have you tried a rollator or a saddle stool? I think the main thing is to try as many different ways of getting around as you can. I now use a power wheelchair which was the best thing ever to happen to me. I travel regularly and undependently on busses and trains.I also found that taking anti-depressants stopped my emotional deterioration.

So don’t give up hope. Find out as much as you can from this forum, this website and any other thing a search engine can dig up.

My best wishes to you, Steve

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Hi Julie , it’s awful isn’t it ,my walking deteriorated rapidly and I still haven’t got a definite ms diagnosis, I’ve just been left to get on with it . For a few years I was off balance and then developed weak legs but very quickly couldn’t walk , at one stage I couldn’t even stand up , I’ve got a bit of improvement I can walk inside my house and of a fashion in my garden but not very well. Outside I rely on the power chair and like Steve says it’s fantastic. Once I accepted it I started to enjoy things again and now with Frazer my assistance dog I go all over the place which is such good fun and means that I can be a mum to my children. I have to admit I still watch people walking with envy, I took it for granted all those years, Michelle and Frazer xx

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I can’t recommend Biotin enough with regard to walking, I was in a wheelchair outside and a walking stick inside and now don’t need either…it does,however,take an awful long time!

Nina

Hi Julie

Not sure if you are new to the forum or not, so just in case, welcome to ‘our gang’ of lovely people always willing to listen, and offer advice where they can.

My ppms has been a slow gradual decline over many years, and although I use a powerchair, I just see it as a tool that enables me to go where I want to, giving me freedom and independence.

Perhaps some physio would help, or as already suggested biotin. Wishing you all the best.

Pam x

hi everyone.

i have just been reading through a few posts and i can relate to whats been said here. ive not been diagnosed as yet but my walking it getting more difficult with my clumsy feet and serious pain. i have just been talking with my wife about my worry that im getting to the point of needing more help than my stick. i dont really leave the house now .

keep your chin up and please God you will soon be able to get up and walk around. dont give up

My walking has worsened steadily. Now use crutches or rollator and have a Musmate.

Sonia x

Micky, the most liberating thing for me was getting a power chair. I went from house-bound to train travel.

know I can walk a little bit but I looked at the possibilities. When I stand up from my chair, no-one calls me a fraud, they just offer help. In November I’m going on an aeroplane on my own.

Best wishes.

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HI STEVE.

thank you for your reply. ive been looking into mobility vehicles over the passed few days. i get this flutter of panic each time i think of how my body is getting worse.

i tried take my dog out last night for a walk using my walking stick , i was only going around the block and half way i just hit the wall, i struggled to get further and had to sit in someones doorway until my wife came around for me.

needless to say im feeling quite low today. maybe its time to put serious consideration into something to assist my mobility and stop being so vein.

thank you again for replying to me.

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When you say an awful long time,How long for you ? I’ve being taking Biotin for just 7 weeks.

Hello people. I have SPMS and walking is getting very difficult now. I use a stick everywhere now except in a building or at work (too vain). I bought a Musmate years ago but didn’t get on with it. Perhaps i will give it another go. How do you find it helps Nindancer? (Or anyone else?).

Gill

I got married 9/11/2001. I will never forget my wedding anniversary. Paul

Hi,

if I use it properly (with the strap at the side of my hip) it helps lift my foot off the ground and swing forward, although my foot is turned out quite a bit.

If I cheat and let the strap sneak to the front, there’s less swing/lift but I can keep my foot facing front and it still assists my hip flexor enought that I lift my foot.

I hope that makes sense, messed up gait is just such a pain! I have a wide gait and my right leg is way past foor-drop. My hip flexor is sluggish and my hamstring completely ignores me.

I’ve tried at home only (as it takes quite a lot of prep) but musmate and a FES on my hamstring and I walk pretty well

Sonia x

Hi Julie, I was diagnosed with PPMSin 1998. After about 5 years after progressing from stick to crutches to wheelchair I had a real depressive and emotional downer because if it. Since then I have managed to get the Basingstoke wheelchair service to give me an invacare XLT wheelchair which is a fixed frame titanium setup. This has given me a much better and much more comfortable ride. They also supplied a Flo-tech cushion, once again increasing the comfort (numb bum is now a thing of the past). Just to add to this (paid for by me) I now have an electric easily attachable 3rd wheel. Although I still hate not being able to ‘just walk’ somewhere I have independence for the first time in years. Plus the wheel gets my wheelchair up to 12mph! That does make it fun! The type I use is made in Hampshire and after much much research I honestly believe it to be the best one on the market. 5 second fitting 5 second removing with 11 miles range. Please note the following things. 1. Nothing gets rid of the inability to walk, 2. we all get frustrated and upset and even sometimes depressed with the parts of our live that MS steal from us. 3. This is NOT a sales pitch for this particular electric wheel, just my personal opinion. Hope this helps. I hate it when people say ‘keep your chin up’ , so keep on keeping on. If you want more info on the bike bit just ask. God bless Dave

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how long to learn to walk without anything i have bad balance i keep falling cause of Spasticity i am doing a exercise perogramme but nothing works for Spasticity at the moment.

Unfortunately it’s much longer than seven weeks, they say about nine months but a friend of mine had much quicker results I

think it’s just a case of wait and see…I found that before the nine moths were up I’d already started to notice that some of my

milder symptoms had disappeared but it took the full nine months for my walking to improve. I now walk almost like a normal

person!!

It’s a long time but keep taking it and hopefully you will eventually benefit.

take care,

Nina x

What was the dosage you took and was it given by your Neuro?

I have PPMS and my walking has improved over several months. Initially my balance was a huge problem which made walking in a straight line very difficult. Now I can walk straight but I get tired quickly. I`m not on any medication and have never had Biotin. My main exercise is an indoor bike which I use daily.

So, although we are all different it`s just to let you know that symptoms can improve even though the diagnosis should show things progressively getting worse.

I`m nearly ready.

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