suziej 24/03/13
Last reply 5 years ago
Walking aid

Hi

I started Gilenya a couple of weeks ago and it’s very early days MS nurse reckons it can take 3 months to become fully effective.

I’m pretty sure I’m relapsing and have appt with neuro to discuss on Tuesday. Although I’ve really reacted t gilenya, sore eyes, sore neck, heavy legs, lw heart rate. All of which I’ve relayed to nurse. I have had a weakness on my left side for a while, it just seems particularly bad at the min, I’m noticeably limping and get tired really easily.

So, I thought I could do with a bit of support and ave started using a crutch to help support me. I just have a couple of concerns; is it ok to just start using a crutch without consulting anyone? And is it a slippery slope? I appreciate how small minded this may seem but I’m new to ms, 26 and diagnosed 18 months ago. Things seem to be going bad very quickly.

Help 🙂

Suzie x

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stumbler
5 years ago

@suziej, you must be like me – absent from school when they gave lessons on walking aids! 😆
However, whilst adopting a walking aid to address unsteadiness is a good idea, using a walking aid isn’t straightforward.
I had a weakness on my left side when I got my first stick. It was only when I saw a neuro-physio that I got told to use it in my right hand, i.e. opposite from the weakness, and had the length of it adjusted!
So, have a word with your MS Nurse to see if they can suggest someone to do a brief appraisal for you.


suziej
5 years ago

@stumbler Thank you. I was trying to work out how to use it for a while, googled it and found the opposite side works better. But I will definitely speak to her on Tuesday and see what she suggests. 🙂


cameron
5 years ago

Ask the MS nurse if you can be referred to a neuro physio: before you start using a stick you should really have a gait analysis. You may be told that you are compensating for the weakness by overworking other muscle groups. If this is happening it will worsen the limp and can set up other problems (as it did for me). There may well be other options than a stick – it’s surprising how doing corrective (physio) exercises can improve balance and strength. But honestly, you need advice on it. The good news is that these ‘secondary’ MS problems are potentially solvable, or at least can be greatly reduced. Good luck with this. xx


reddivine
5 years ago

You should see a physio straight away. Get GP to refer you. Walking with any aid is not straight forward. you need to ADJUST the stick and/or crutch. Physio will do this properly.
Or you could be aggravating the problem, unwittingly.
PS: crutch is usually when you can’t put any weight on the bad foot. AND you can not carry a bag w a crutch.


suziej
5 years ago

Thanks @cameron, I already have a physio who has attempted to help me with the vertigo. He also highlighted the weakness early last year. I will give him a call. I don’t want to make it worse or get new problems 🙁

@reddivine thanks, I was worried about aggravating it. I am curious tho, how does it work when u can’t put any weight on it? 🙂


janep
5 years ago

Hi @suziej, you’ve had some great advice so far so I won’t repeat what the others have said but just wanted to add some reassurance that using a crutch or cane now for some extra stability and confidence won’t mean that you’re necessarily stuck with it! I was usign crutches late last year during a relapse but only needed them for a couple of weeks. MS symptoms are extremely unpredictable but generally go both up and down in the RR phase so fingers crossed this is just a short blip while your system adjusts to the gilenya xx


suziej
5 years ago

Thank you for the reassurance @janep I’m surer ur right 🙂

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