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Legs getting worse

Hello everyone! I havent visited here for some time - busy, busy! But visited my neuro today, and hes noticed my walking is significantly worse (I already knew that - had another “dip” last week, and the legs have felt pretty rubbish since!) He said hes concerned at the speed my mobility is worsening, and Im now feeling a mixture of panic and emotional numbness. Has anyone got any advice, please? Or just some comforting words would do!

Faith WB

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I feel for you, my walking is the worst bit about MS for me :frowning: It seems like there’s a mixture of so many things i.e. Disturbed gait / foot-drop / spasticity / poor co-ordination and a ridiulous weakness on my right leg/hip.

I’m taking LDN now and it seems to have helped me feel generally better.

I have a physio appointment on Monday - I’m half excited and half scared!

I think that’s all we can do is try not to let it get the better of us and keep on trying :slight_smile:

Sonia xx

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Hi, wondered where you`d got to Elizabeth!

The main thing to keep in mind is safety. Our mobility is usually the main thing where safety is involved. Perhaps you could ask to be referred to physio, to see if there is anything they can suggest to help.

Is it time to think about using mobility aids?

pollx

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Hi Faith; chin up, you are not alone. My walking has been getting progressively slower over the past year or so as well, even though I actually feel fitter than I have for ages, in terms of being able to stuff at gym etc. What really does kill me though is ‘standing’; I find it very difficult for prolonged periods of time, which is why I’ve brought a shooting stick to watch my son’s rugby matches with. Advice; whatever you do, just keep moving, no matter how slowly.

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Hi Faith, I take it the damned Consultant had nothing positive to say? You’re better on here, 1st one stick now two, but i’m with Clucker Pigeon ‘just keep moving, no matter how slowly’ Take care we are the gangM

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Hello Faith, Poll is spot on with safety. Since I retired my legs have become a lot worse. I assume this is because I have stopped doing the little walks around the primary school where I worked. I’m now starting to make myself get around the flat and bit more and do things with safety in mind. Losing your walking is one of the worst bits of MS, especially if you think back to what you could do. I’m so glad that I was able to do these things. After teaching some children with spina bifida or cererbral palsy, I’m grateful for having a normal childhood and adult life until things were starting to show. A physio is good for advice but some like to push you physically which tends to mess up the rest of the day! As clucker says, slow movement is better than no movement. Best wishes, Steve (that infernal return key still hasn’t turned up.)

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While I don’t disagree with a word you say, I can strongly relate to this bit.

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Hi, I agree with the others, keep walking every day even if it’s just a short way and slowly… and safely… and remember walking indoors still counts. Surprising how much walking you do in your own home.

For me the problem became much easier once I got a mobility scooter. The ability to get out on my own and get around the shops, stop for coffee etc etc, stopped me feeling ‘trapped’ by my lack of mobility.

It’s a big step (excuse pun!) to get mobility aids but once you get over the initial self-consciousness and nervousness it’s like a liberation.

Take care and remember we all know what it’s like,

Pat x

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Hi,

I agree with the others that safety is paramount, but also think that even a little albeit slow walking is good, if you can manage it.

I use a powerchair, and Pat is right, once you conquer the initial self confidence, you have freedom and independence.

Take care

Pam

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Hi Sorry to hear you are struggling, I have gone from I walking stick to 2 then crutches onto a zimmmer and now in a wheelchair and awaiting an electric one. I never gave in easily and often waited to long to progress to the next aid, They are just that AID’S and they help you keep mobile dont think of them as making you worse they are helping you keep going for as long as you possibly can and are your friends I took 20 years to get into the wheelchair which has only happened in the last 9 months and it is my chariot I must say I am looking fowards to the electric one (I have an electric scooter ad used it for the last 13 years) The electric one is indoor/outdoor and means I can once again go to the local shops for milk or a paper. Yippee

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Hi Faith, Know how you feel - my legs are slowly getting worse. I have gone from a stick to two crutches this year and use a w/c from Shopmobility when I go shopping! Sorry I can’t really come up with any sage advice but do know how it mkes you feel. I walk every day around the house, up and downstairs but some days I seem to be rooted most of the day in my armchair as my legs won’t cooperate. Just try to keep going as long as possible and stay positive! Teresa xx

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Hi Faith, Seems as though we all have the same problems! I’ve recently had to start using a stick inside the house, I’ve also started having days when my legs, like Theresa’s, just won’t cooperate so although I’ve used a manual chair when I go out for a few years now I reluctantly need to use it inside the house occasionally. Like the others I think it’s so important to ensure that you walk as much as possible when you’re at home. I’m hoping to start the drug frampradine soon ,which you may know, can actually improve walking in about 35% of people who try it. There are several people on the forum who are trying it at the moment. Take care and best wishes, Nina

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Thank you so much to all you wonderful people who answered my post. Youve made me feel like part of "the gang", even though we all move pretty slowly, usually with support of some kind! Ill take all your comments and advice on board, and remember to do my “legsercises” (New word I`ve just made up - I quite like it!), each day. Faith.

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Hi, really sorry to hear about your legs getting worse. I’m in the same position. It’s a good idea to go out for a walk every day. It doesn’t matter how long the walk is, or how fast you go. The important thing is to use your legs for more than the few seconds they get used around the house. I find that a daily walk also keeps my spirits up - the modest exercise releases the naturally occurring ‘happy’ chemicals in my brain and I stay cheerful. Staying in all the time is definitely A Bad Thing.

I’d also recommend getting some physiotherapy, as some simple exercises can help you get the best out of your legs by keeping them as supple as possible.

When there’s a limit to the distance you can walk without feeling wrecked, then taking to wheels is a great liberation. I have a powerchair and I’m thrilled to be able to go (almost) everywhere I used to go, and to be able to travel around London on buses and trains again, all of this without getting knackered! If you’re doubtful about taking to wheels, try to see it not as a capitulation, but as a useful tool which tells the MS monster where he can stick it - you will not be beaten by him and your wheels will show him you mean business! After all, we don’t reject other tools because they represent a capitulation - imagine DIY without an electric drill, or trying to read a book without glasses, or eating your meat and two veg with you fingers rather than with a knife and fork (yuk!) - not to mention baked beans.

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I understand your frustration. My legs seem a bit worse too. I’m lucky in that I am still mobile. Dx in Feb and haven’t really noticed much progression. I think the weather, and stress has something to do with it. Recently back from 2 weeks in the South of France (camping!!). No work, sunny climate and good food - I almost felt “normal” again. Back home, back to work and the fizzy legs have reared their ugly head :0( Keep smiling. I try to keep positive but I still get watery eyes when I’m left to think about it. XX

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Oh yes, and wine. Red wine!!!

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This is my first post on here - just been upgraded (?) from RRMS to PPMS :frowning:

Been absent from work for the last 4 months (very understanding employers), now suffering “fizzy legs” a lot. Tried to explain to hubby that it was like holding onto the electric fence we have just installed at our smallholding!

Pleased to be on here and find I’m not alone, there are so many brave people on here suffering much more that I am, makes me feel so much better.

Onwards and upwards now, go to feed the hens, geese, sheep and cows, they are the best therapy ever!

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Hi Von

Welcome to our ‘gang’ lots of lovely friendly people here, always willing to listen, offer a shoulder or give advice where they can.

When you can it maybe a good idea to start a new thread, more people will see it, rather than on the end of a thread. Hope that makes sense!

Look forward to seeing you on the forum, have a good weekend.

Pam x

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Welcome to the gang Von!!! You’re with a very elite class of people here. Only about 10% of MSers can boast of having PPMS!

Don’t believe the ‘it’s the worst type of MS’ myth. For most of us it progresses slowly. Aggressive RRMS can be worse.

I’ve had the fizzing legs for a few years. Used to come and go but it’s with me all the time now. The closest I came to describing it was once in a food shop standing next to a big chest freezer on a wooden floor… so the floor was vibrating. That’s how my legs feel… sometimes so bad I feel like I’m in a small earthquake… and sometimes spreads over whole body. Such fun!

You’ll get lots of advice, support and friendship on here!

If you want to start a new conversation, click on the ‘new thread’ button, put in a title and away you go.

Very glad to have you with us.

Pat xx

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Bless you, I did the opposite (more or less!) and I’ve just started a DMD but I’m still ‘likely PPMS’. Glad you found your way here, it’s a lovely group

Sonia x

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