Last reply 1 week ago
Balance/walking

Hi all
Hope you’re all doing as well as can be!
I have been going through a relapse for a year now. It’s done the rounds on me but has resulted in a considerable lack of balance when I’m walking meaning that I can’t walk unaided.
It’s annoying because before this relapse it would have been hard to tell I had MS…
My question is, does anyone have any top tips for quickly regaining balance/ability to walk unaided? I have a small daughter so exercising is difficult for me. I have been told about the ms gym etc but I’m looking for something that works quickly (if this exists!) Is there a drug? Specific exercise to do at home? Stretches? I’ve just started Ocrelizumab and am hopeful this may have some positive impact but who knows.
Thank you all x

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watsoncraig
1 week ago

Ataxia can be caused by MS. This has a few effects such as balance and walking issues. There is a drug ampyra (the Walking drug you can try)


a-laskey90
1 week ago

@watsoncraig thank you but unfortunately I can’t get Ampyra in the UK 🙁


watsoncraig
1 week ago

@a-laskey90 it’s uk name is fampyra (Fampridine) and I see that it’s not available on the NHS as NICE deem it nit cost effective 🙁


johns
1 week ago

Yes – Fampyra if you’re a responder and have the money, is a drug to improve balance.


a-laskey90
1 week ago

@johns how do I go about getting this in the UK as it’s not approved by NICE?


watsoncraig
1 week ago

An IPTR (Inividual Patient Treatment Request) or PACS2 but a doctor has to apply for it


bing15
1 week ago

@a-laskey90 the same thing has happened to me relapse that’s totally affected mobility, I have also started ocrevus this summer, if you get any tips on mobility pass them on, I’ve just been reading about fampyra and at this stage would give anything a go 🙏🏻 X


mlgilber1
1 week ago

Also, if you can’t get ampyra you might want to try a compounding pharmacy for 4AP. Here in the states ampyra is super expensive so people will get 4AP instead. Ocrevus has helped my mobility. My balance had improved and I haven’t needed my walker since a couple of months after starting it. Good luck


nutshell88
1 week ago

well i find the information vvery helpful in my case i dont use a walker havent ever used it over a week or two
but my walk is funny and balance restrict my movement
hopefully my dr prescribe 4AP or ambyra for me not sure if it can be taken with gilenya.


caroline_logan
1 week ago

@a-LASK-90
Re my poor balance
Hi there I use MS gym, it help but I need more to gain my confidence and get more steady on my feet, My physio suggested an app to download touse at home, I was slow to get started but as the weeks pasted and gained confidence I moved up the levels really can praise this enough, I started with some one with me for confidence
Now I do it on my own getting stronger and more confident daily, stopped using my stick for now,(great feeling ) the app costs £2’99 ( I think) it’s called clock me
It has a Cathay the clock is in with boots under it, in my opinion well worth a try
Good luck on your journey stay strong think positive
From Newby16

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