muscle Wasting

Everyday living
1

Hello

Sorry to keep harping on, but I am feeling rather desperate.

I had a relapse that lasted four months, followed by a shoulder injury.

In total I had about six months wih little or no exercise and the last few days my left leg has been unable to hold any weight and I can barely stand.

Is there any way back from this? My relapse and injury are now over so I will be able to exercise a little.

I am very frightened that I won’t be able to get the muscle working as it should. Is it possible?

Thanks

Bernie

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Hi Bernie

No need to apologise. And it can be understandably frightening when things like this happen. I’d ask to be referred to a physiotherapist who specialises in neurological conditions. They’ll be able to help improve your core strength, and make the best use of what you’ve got. I always benefit from seeing the physio.

Dan

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bernie

i am going to reply with reassurance but havent got time-carer due but promise that i will do later…

ellie

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Sound advice from Dan and nothing like a spot of physio for getting your bits moving. These exercises from MS Trust might help until you get sorted out.

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It’s the reason why I’m as disabled as I am. Muscle wastage is a serious issue.

I think everyone who gets a diagnosis of MS should also get good, experienced neuro-physio help at the beginning. I was told every time I saw a physio (which would be for about 3 visits each time then stop) that my core was weak. I was never given any effective exercises to do, let alone a focused exercise plan/regime, until it was too late. I actually didn’t understand what they meant by a ‘weak core’!

I developed foot-drop, suffered more and more core wastage, still never got any help. Eventually was referred to orthotics, where I was given a 15 minute appointment that resulted in my being given a ‘Neurodyn’ foot brace. The orthotist put it on me, spent no time teaching me how to put it on myself, then sent me away. That resulted in my getting a badly ripped open blister on my heel. Which meant even if I knew how to put the Neurodin on, I couldn’t use it for weeks, till the injury got better. Which it never did.

I suffered a really dreadful relapse, which put me in hospital, unable to move or feel anything below the waist for weeks. Eventually I was moved to a residential neurological rehab unit, where I finally got some effective physio. Too late.

I’ve been unable to walk since then. I pushed until an application for funding of FES was submitted. I didn’t know that my CCG had a more or less blanket refusal on applications for FES (except for isolated special cases which MS does not and will not come under). Eventually, 6 months later, I discovered that my application had been refused - although nobody thought of telling me this. And I also discovered how to self fund it.

I self funded FES. I use it a very small amount. Only to go about 10 metres at a time, about 3 times per day, using a walker. I lean too heavily on the walker, which has currently given me a severe shoulder injury. So right now, I can’t walk at all. I have severe shoulder and hip pain for which I’m seeing a private physiotherapist. I’ve just moved my next FES appointment up, hopefully I can get the hip and shoulder pain sorted and try to stimulate the hip and the foot with a dual unit I tried once before but we never managed it. This time I have more experience and more resolve.

My core is still very weak. I really wish I’d been taught how to strengthen it when I still could. I wish everyone who has a diagnosis of MS would start to get, and keep their core from withering away. It makes one hell of a difference later.

Sue

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Thank you all.

Sue, you are absolutely spot on.

My physio said the same, and didn’t stress the importance of core exercises.

it should be tod of the agenda for the newly-diagnosed?

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The MS Trust also have some good core stability exercises on their site and the basic ones work very well.

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as promised bertie…

i participated in aerobics for almost 30 yrs and i strongly believe that has contributed to how i manage/cope today.

dont want to bore you with the details but in 2012 i had a huge attack. within 48hrs my speech was affected, all of right side-upper and lower limbs, permanent loss of sight in left eye. couldnt swallow. every cloud etc-i am now 5 stone lighter!

i had to retrain my brain (instead of going a to b it goes a c t w f k to get to b!) so it takes longer and more effort to do anything. i lay in bed for days immediately afterwards imagining that my hand was moving/raising. my idea was to try and reconnect the pathways somehow. i never gave up (which is different from fighting ms-i detest that term!) several weeks later i managed to raise it in a fashion-no control at all but it moved! now 4 yrs later i can raise it with just a wee wobble. i still have no fine motor control-havent written or knitted in these years but the damage was so severe i know that i am lucky to do what i can.

my leg is ‘dead’ but the physio arranged for exercise bars in my home and i use them frequently to get up on toes-its getting harder because i continue to progress with ms but my mind is strong knowing that i am doing what i can to help myself to try and maintain current abilities (small tho may seem to others!)

so yes physio exercises are essential and i wish all involved in our care realised this!

dont worry (that helps nothing) do (that helps lots)

ellie

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I have PPMS. And I know where that’s heading so I’m surprised I can actually get up every morning.

Last year I gave up doing the NHS physiotherapy exercises as I didn’t feel they made any difference. I reasoned that as MS is a neurological condition that I might be better off by trying to reconnect my mind with my body. I took a stab at Tai Chi.

I told the teacher why I’d joined the class. He admitted later that he had no idea how to approach the condition but by just doing the “form” we both noticed that, within month, I’d increased my core strength and fluidity of movement.

It’s hard work - but if it’s not difficult it’s not worth doing. See me walk at Neil Webster’s Tai Chi Facebook. You have to scroll down a fair bit but I’m there.

Anthony

“As the nervous system degenerates the brain can find other solutions. By ensuring that our brains are equipped with a variety we can hold on to who we are.”

The Brain.

BBC 4.

David Eagleman.

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Thank you for that post Ellie. I have often wondered whether the brain is able to retrain this way.

A good example is, I suppose, the double visionI had a couple of years back. After a few months vision was back to normal because my brain had learned to use other nerves.

This is, of course, because such exercise takes no effort, but other exercises take considerably more.

Bernie x

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hiya bernie

i dunno if the eyes work in quite the same way???

i lost vision completely in right eye but it returned fully within 3 months. so when i lost it in left i thought the same would happen-recovery in 3 months ish but no…

i am not aware of specific exercises for the eyes… i have to remind myself that my eye is ok-its the optic nerve thats damaged.

have a good evening…

ellie

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Thankfully I have been reffered to Neuro Physio and am at the gym three times a week working in my legs the best I can.