joanne46 09/04/18
Last reply 3 months ago

I know this might sound like a silly question….but I’m reading conflicting articles and wonder if I can have some real time feedback….my question is….with MS (I have RRMS just treated with lemtrada) can walking distance and confidence be improved upon ie by doing it…or is it a foregone conclusion that it will only deteriorate over time? Thanks peeps

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3 months ago

Hi @joanne46. I can only speak for myself of course but, over the last year since initial relapse and exhaustion preventing any activity I have improved on walking time. A year ago, I could walk for 12 minutes before everything became spongey. So I made myself walk 2 x 12 minutes a day, rather than push myself. Although I now choose to walk slightly slower to keep core body temp down, I do 25 minutes per walk before the weird sensations kick in. Building up muscle memory and tone really helps, I think. Don’t give up, but don’t push yourself beyond limits would be my advice! X

3 months ago

Thank you @vixen that’s just what I wanted to hear 👍👍 I would be happy with a 25 minute slow walk xx

3 months ago

You absolutely can and will improve your walking by exercise, just like anyone else without MS can improve their fitness. Like vixen said, don’t push yourself. Take time to build up slowly and if you can get a physio referral then do!

3 months ago

Hello, Yes I have been using Lemtrada for a couple of years and it has helped with my walking to a degree but you do need to keep it up once started otherwise you do loose the benefits, if there is too long a break between walks but don’t try and overdo it, which I have done before now and ended up tiring myself out for a number of days. But yes do start low and increase as you go. I have been lucky to have been accepted for an FED (Functional Electrical Stimulation) device through my MS nurse and Odstock Hospital in Salisbury but it did take around 3 years to get the assessment done as a lot of FED clinics have been closed due to lack of funding! It has helped the distance I can walk before my foot starts to drag and I run out of energy. Ask your MS nurse if she can point you in the right direction.

3 months ago

Hi @tavyak and @sciencegeek
Thank you both so much…feeling flat and exhausted today and worried that all my efforts may be fruitless….and that’s really helped lift my spirits but you are so right about not overdoing it…which I think I’m Thursday 121 gym session, Friday 1/2 mike walk, Saturday 3/4 mike walk and then yesterday and today too tired to walk at all…so I probably need to be more consistent…thanks again…I’m still learning x

3 months ago

I can only reiterate on what everyone else has said, I find that my legs feel like all the energy has seeped out and my balance is shot, what I do find really helpful is weight training, I have done that for years and now I do a Krav Maga class twice a week, it makes me feel like I’m still here and not done with life!! Do what you want when you want to do it and you know you’re own body, don’t ever feel like you’re efforts are fruitless because they never are!!! If you want any advice on resistance training I can help you, what I also find really helpful is taking high doses of vitamin D (5000iu daily) vitamin B super complex and Q10 these make a big difference to energy levels I hope you carry on and be good to yourself
Mike 😉

3 months ago

Thanks @mikemoore…I currently take a high dosage vitamin D, cod liver oil, multi vitamin and also vitamin B6…will add Q10 to the list! Can you recommend a vitamin B super complex please…and my 121 gym sessions are reformer bed (with resistance weight) and mat pilates with main emphasis on core,legs and glutes….but I’m so fatigued after my sessions I can barely climb up the stairs to bed 😥x

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