Last reply 2 years ago
Deteriorating walking

Hi. 17 years after diagnosis, (13 of which were practically symptom free), the last 12-6 month my ability to walk is going RAPIDLY. Has anyone experienced a fast decline? Its pretty depressing & just as depressing is the huge impact its had on family life. Both with my daughter & partner… Thanks

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noelie
2 years ago

@craigsreddie yes. Have you spoken to your MS nurse? My story is different, my walking went rapidly in 2015 (first symptom) then i was diagnosed with RRMS in 2016. I never recovered though. At the moment, i can manage 500m at best with a foot splint or electric stimulation. Do you have physio? you need physio, quickly, go private if you have to but don’t delay. They’ll give you exercise to address the issues, do the exercise religiously, try to rewire. My inability to walk is draining me as i cannot do anything without being reminded that i have ms, can’t take my daughter out as i want to. It’s devastating and effecting my relationship. It is depressing as you say, and as well as fixing your leg, you need to look after your mental health. Try to relax and don’t be too hard on yourself. Meditation helps me (headspace app, 10 min every morning when i wake up). Take care


Anonymous
2 years ago

Hi Noelie & thank you for responding. Yes I spoken with my MS nurse. I have had physio, but this causes pain (not only is my walking difficult it is really painful!). For the pain/spasticity I have tried pregabalin, sativex to name a few. She said we have exhausted the meds & I’m going to a pain clinic in early January. I have tried acupuncture in the past which helped a little but this may have been psycho schematic. I am also trying reik tomorrow! It is draining both physically & mentally & you’re right a constant reminder of the condition 🙁

Relationship wise I hope it improves for you. It has pretty much killed mine. I have a ten year old daughter & we both miss out on so much (It must be so tough having a disabled dad & it will only get worse, I guess, as she moves into her teens…

Thanks again for your reply, nice to ‘meet’ you & you take care too…….


cameron
2 years ago

But was it specialist neuro physio? It sounds as though you haven’t had really specialised input to address what @noelie is talking about.


mmhhpp
2 years ago

Hi @craigsreddie

Yes i have declined rapidly specially in the last two years. I stopped walking in may now wheelchair user.

I am also 44 years old and I was diagnosed in 2010. Initially I was RRMS but this year i have been diagnosed with SPMS

Ms sucks stay possitive as much as you can, I also have two children 10 and 8.

Unfortunately I do not have any good advice I will be going to London end of this month because my current specialist is rubbish let’s see what they say ….

Since i’ve become SPMS (about 2years) I feel that I have declined. An added problem for me is that at work they have limited where i can walk about following a few falls so my muscles are wasting away more. It also affects my confidence so now i don’t want to walk about. Self fulfilling propehecy!!

So if i can give you any advice it is to keep everything moving as much as you can while you can!


stripes14
2 years ago

Hi Craig, sorry to hear of your situation.
I was diagnosed 2013 rrms and gradually over the years my walking has declined due to pains, spasms and stiffness in my legs.
I use my tens machine on the muscles on my legs and generally all over and this helps release some pain.
I’m on pregablin ….which I definitely can’t do without, amitriptyline and baclofen which helps with my spasms during sleep.
As for your family worries I went through similar and after 6 sessions with a neuro psychologist I was left in a better place.
Please have a look at CBT also as another way of therapy regarding your thought processes.
And finally just remember your daughter no matter what will always love you …… Good luck mate 👍


Anonymous
2 years ago

hi & thanks for the replies, yes I did see neuro physio’s. I have also had Botox injections. It seems to me a vicious circle, it hurts to walk & when I do the physio exercises or walk a longer distance it really hurts.


yippee
2 years ago

I was first diagnosed in 1974, had 10 years of RR, mostly numbness in body and legs, then like you, 15 years almost symptom free. Been seconday progressive since then, but managed to stay in work until retired six years ago at 60. The last two years have been a rapid decline in walking ability. I’ve had neuro-physio help but find exercise difficult because of fatigue and I don’t think it helps me much (I’ll get shouted at for that). I try to keep as mobile as possible with walking aids etc. but my brain tells me I am just postponing the inevitable. I know I shouldn’t hve that defeatist attitude but thats the world I live in at the moment.


bok2bjan
2 years ago

Hi @craigsreddie – yes – very much like you, I had the first 15 years or so with just the relapses with balance issues and TN and other odd things, lol. I got foot drop early on, which never resolved – but didn’t keep me from walking. Then a few months ago – things gig much worse. The numbness became so bad – I couldn’t put any weight on my foot. And spasticity got so bad, I couldn’t bend my ankle to walk.

Mine became SP a few years ago, and altho no new lesions – my mobility has gone down fast. I think if happens a lot actually. I have axonal loss – as opposed to new lesions. I believe what I read many years ago – the ultimate disability a given patient experiences, isn’t related to whether you csn stop lesion load.

I never considered my MS a big issue, compared to other diseases I have. Not the case anymore. What challenges are you facing now? Blessings


hopeful
2 years ago

>my situation is PPMS diagnosed 2015. my left leg is numb and weak but otherwise I can walk all the way around my neighborhood even tho I wobble and weave like a drunken sailor. as I read the posts of others I can see what I am likely to face in the coming years and my MS seems like a coiled rattlesnake waiting to strike. but I prefer to count my blessings rather than my deficiencies. we shall see if I can still make that statement when my walking begins to go.


Anonymous
2 years ago

Hi all I’m slightly confused (which with my MS brain doesn’t take much!) I’ve had lots of responses to my post (thanks) how do I reply to that person? Do I need to do this as they come in?


stumbler
2 years ago

@craigsreddie , there are no hard and fast rules to this forum. Well, apart from the House Rules, https://shift.ms/house-rules .

Just do what you’re comfortable doing.

If you do respond to someone specifically, you can address them by prefixing their username with an “@”.

Otherwise, any questions, just ask. 😉


cameron
2 years ago

Have you explored orthotics and/or functional electric stimulation? It’s been a long haul for me, but five years ago was prescribed a state of the art orthotic splint that literally transformed my walking. The amazing (and also shocking) point about it all is that it came about by chance. A very switched on physio in the FES clinic who suggested it had trained at the same college as the head physio in my hospital. She emailed her with a recommendation and because of that link, I got it and on the NHS. Result: walking distance virtually trebled, fewer falls, better quality of life. What I took away from this is that with MS there may be options, if you search them out. Or in other words, more than one way to skin a cat! xx


Anonymous
2 years ago

@stallionicchampionic Sorry its taken me all day to reply, only just found out how to! Yeah I get that about work & regaining confidence after a fall is tough (I’ve had a few! At my work there were lots of stairs & obstacles. They did all they could to help, but I stopped working at the end of 2016. I do try to keep moving, but its getting tougher. I too have a chair, but have only used it outside so far. Take it easy….


Anonymous
2 years ago

@stripes14 Hi Sean & thank you. Glad youve found something that helps the pain. I have had all of those meds. At the moment I take baclofen tizanidine for the spasticity/pain but neither really helps. I’m going to a pain clinic early next year – oh the joys!

Good luck to you too!


Anonymous
2 years ago

@yippee I’m very much the same. I dont think its defeatist I prefer pragmatic! Fatigue really gets me too. Sometimes I’ll walk longer than I usually do – I’m then in terrible pain & so tired that I spend much of the next day in bed…


Anonymous
2 years ago

@bok2bjan Yes our symptoms/progress are strikingly similar. Every ‘recent’ MRI shows no new lesions but my mobility is going down super fast. My biggest challenges now are getting up from a seated position & my balance, or lack off, is shocking, I think a serious fall is not far away, but I’m trying not to!!

Take care


Anonymous
2 years ago

@hopeful Thats a good attitude to have… Hopefully the walking wont go (I don’t think its guaranteed?!) I wouldnt worry about the drunken sailor thing… I’v3e grown pretty thick skin about my stiff legged walking – I only fear gangs of teenagers laughing at me!


Anonymous
2 years ago

@stumbler Thanks mate 😉


Anonymous
2 years ago

@cameron Thanks! I tried orthotics for toe lifts but I walk so little these days it didnt really help much… I may look into the stimulation… grea


Anonymous
2 years ago

@cameron …t its helped you so much!


yippee
2 years ago

@craigsreddie Yes, I forgot the FES. I’ve had one for several years on the NHS, and paid for the wireless upgrade model a year ago. I was a real help with foot drop and knee flexion for several years while I was still at work but, like you, I don’t do much walking these days. I’ve got a mobility scooter that gets me into the local town centre but just getting down my driveway to the garage where I keep it wears me out.


Anonymous
2 years ago

@yippee I walk so little as the pain & fatigue ain’t worth it – I’m looking at a mobility scooter on Wednesday & hopeful it will get me out & about more (I’m home most of the time at the moment, which suits)


merfield
2 years ago

@craigsreddie, I’m really sorry about yr speedy decline. It’s a bugger sure enough. I’ve been using a wheelchair / Batec combo to walk/run the dog in our park but I overbalanced on a sloping pavement on the way home and broke my clavicle so do be careful on your new scooter. 4 wheels may be more stable than 3, I’m not sure though. I was told that it’s a dodgy situation going ACROSS an incline and that its best to go up or down it. I will have to find an alternate route home! Go safely!!!! Xx


yippee
2 years ago

@merfield My scooter is a three wheeler TGA Supersport which feels very stable on most surfaces, but I’m sure you are right about traversing inclines. I take more care than I did as a pedestrian, particularly at road junctions.


sianny
2 years ago

Hello @craigsreddie
My mobility has gone rapidly downhill since original diagnosis In 2014 now I have foot drop in both feet terrible balance and can’t use my right hand or lift my right arm. I use a powered wheelchair and feel weak and stiff in the morning this improves slightly during the day. I too have a daughter she will be 10 soon, it has been hard for her to comprehend what is going on and accept that I can’t do a load of basic things we used to do together any more but I am always here for her.
Wishing you strength to cope with this rotten disease.


Anonymous
2 years ago

@merfield hi & thank you! I’m only going to test the scooter I’m not 100% sure yet… sorry to hear about your accident- heal quickly 🙂


Anonymous
2 years ago

@sianny

My balance is awful too. I’ve had falls but nothing serious, I do worry there’s a bad one coming (so many close calls). I’m sure your daughter, like mine, will ‘get her head around’ things. It’s good to keep her involved & explain things. My daughter now notices when I’m especially tired & tells me to go for a lie down! Good luck with things & sending some strength back 😉


Anonymous
2 years ago

@yippee at the moment I have a quickie wheelchair & E-motion electric wheels that cost a fortune that I don’t get on with at all. So I’m keeping the chair for inside/being pushed. I’m exchanging thrice wheels for a TGA Breeze which I’ll only use on pavements…

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