Last reply 1 week ago
I can’t move.

My legs have completely given up on me, they are unbelievably solid, like Stonehenge. I am currently on no medication, trying to see if this is a relapse or something. This has lasted 2-3 weeks already and seems to be gradually getting worse. Does anyone have any ideas on what I could be doing to improve my current situation?

Thank you,

Jay.

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ellarosepetal
2 weeks ago

@jayjay10
Can you walk or move them at all? If you can I’d probably just try but very slowly. Have you contacted your neurologist?
I’ve had a funny numb leg but doesn’t sound like what yours is as i can stikl walk etc. Hope you feel better soon, the body is very good at fixing itself, but obviously I’d speak to a neurologist or MS nurse perhaps too 🙂


itsmewithms
2 weeks ago

Hopefully you have discussed with your neuro…sounds like nasty spasticity. There are some Dx for that and they should have ideas. Also some diet changes possibly…we have varieties of Drs in the US they call “functional” Drs that focus more on lifestyle and diet that may have additional ideas…does warm bath or massage help at all?


stumbler
2 weeks ago

@jayjay10 , how active were you before this started?

If your lifestyle was completely sedentary like mine, then you may need to gently stretch these muscles out to their fullest extent, e.g. some of these :-

https://www.mstrust.org.uk/life-ms/exercise/build-your-own-exercise-routine/stretching-exercises


jayjay10
2 weeks ago

@ellarosepetal

I have very limited motion in my legs. I can only move a little by using my walker, but even that is becoming quite hard right now. I will give my neurologist a call and take his advice on what to do next.

Thank you for your kind wishes and advice. 🙂


jayjay10
2 weeks ago

@itsmewithms

Yeah this is torturous spasticity beyond the levels of severe agony and pain. I will make some dietary changes for my MS and general health.

Baths do normally help but I struggle to step inside one these days. 😂

Thank you for your helpful comment. 🙂


jayjay10
2 weeks ago

@stumbler

Thank you for that link, it is very much appreciated as I need all the help I can get. I will take my time doing these and try to get back to a bit of normality.

Thank you for your helpful message. 🙂


b-o-b
2 weeks ago

@jayjay10

Hi. Sorry, I know it’s not your question, but why are you currently on no DMT ?


jayjay10
2 weeks ago

@b-o-b

I know what you mean, it’s an absolute joke. My neurologist is as stubborn as anything. He believes in power of the body to dethrone all, like wtf. 😂


b-o-b
2 weeks ago

@jayjay10

Find another one. You need to be on a DMT.


b-o-b
2 weeks ago

@jayjay10

I mean, maybe 10/15 years ago when we only had CRAB drugs (injectables) with only like a little 30% fewer relapses compared to placebo and no evident impact on disability progression, I could have (maybe) understand (a little bit) some neurologists that wanted to go for ‘watchful waiting’. But in 2020? Noway. We know that time is brain and we have high efficacy DMTs that can make you free of relapses or almost (at least 70–80% fewer relapses than placebo, and more). Just have a look on what you can get with some monoclonal antibodies like ocrelizumab after rebaseline at three months, like no more T2 lesions at all (and yes it’s come with side effects but MS is a bad disease): https://www.ocrevus.com/content/dam/gene/ocrevus/hcp/images/charts-reductions-lesion-activity-two-desktop.png


b-o-b
2 weeks ago

@jayjay10

Sorry, I just read your profile. I understand that you had a first round of alemtuzumab some years ago (it’s a good drug but which came with second autoimmunity like you know…). Did you have only one round of it? Normally, it is given for 2 (separated by one year between them) or even 3 rounds when needed.

Do you have relapses in the last years? Do you have annual MRI?


kelly_hornick
2 weeks ago

I would have thought you would be having a relapse. Your neurologist didn’t think that?
Have you tried Botox injections in the muscle? I get them in my legs when they get really spastic. 🤷🏻‍♀️


bullman
2 weeks ago

@jayjay10 Have u ever seen a seen a neurophysiotherapinst? They can give a range of exercises.


jayjay10
2 weeks ago

@b-o-b

I will definitely be changing my neurologist, once I start to get to a bit of normality.

I’ve had a few relapses over the past couple of years, my last one was hospitalised as I had no motion in my body.


jayjay10
2 weeks ago

@kelly_hornick

I don’t think this is a relapse as it’s only a few symptoms that have come along this time round.

I’ve never tried them before, I will look more into it. Thanks. 🙂


jayjay10
2 weeks ago

@bullman

I’ve never seen one of them before, I will give them quite a bit of research, thanks. 🙂


b-o-b
2 weeks ago

@jayjay10

Don’t allow relapses to occur. Find a good neurologist and put yourself on a powerful DMT (if you didn’t you should go for a second or third round of Lemtrada, otherwise anti CD20 or Tysabri could be good choices after anti CD52).


vixen
2 weeks ago

Hey @jayjay 10, how you feeling today? It’s a vicious circle when you can’t exercise; exercise is painful and difficult so you pull back, but then activity makes the muscles worse – it’s like we can’t win! Have a look a something like a Wondercore Smart, which you can use in many ways. Every evening I sit watching TV with my ankles up on the bars. I gently push the bars down and it tones the muscles all the way up your legs. And yes, consider changing to another hospital with a more proactive neuro team; it’s your right to choose the hospital. Keep your spirits up x


jayjay10
2 weeks ago

@b-o-b

I’m going to be definitely changing neurologists, it’s quite simply pathetic given his mindset. I am going to be mentioning the ones you have recommended for me. Thank you for your help. 🙂


jayjay10
2 weeks ago

@vixen

I’m trying to take each and every day as it comes. I am also trying to benefit from a few simple, small exercises, I find that my legs tire just after a few seconds. I will definitely be changing as I can’t put up with the little pointless help anymore. Thank you for your kind wishes and advice. 🙂


rob_woodhouse
2 weeks ago

@jayjay10 alright mate just read your bio and it all sounds so familiar I was 21 when I was diagnosed and I’m now 38 so ms has been in my life for sometime. As you are more than aware it’s shite and I was just wondering if you’ve got any advice as I’m not moving much at the minute as my legs have also given up good luck to you buddy those people that say it gets easier are liars lol


sigmadelta
2 weeks ago

@jayjay, I have the same problem, legs feel like they are trying to solidify.
I am also on no medication, tried plegridy 3 years ago, useless.
As for warm baths, be careful! Last time I had one i was completely immobile for a couple of hours.
Most if not all the current drugs have side effects ranging from irritating to horrendous.
I am in constant pain ,level of which varies from day to day,but all the painkillers I have tried cause constipation, which is equally painful.
I get abit tired of hearing advice from ppl who only have a slight limp , or those who still jog a couple of miles a day. Having said that ,only 6 years ago that was me too..lol.
Another issue is that my abdomen is following the same path as my legs. i.e. painful whenI try to walk.
I would guess that its because the stomach muscles are trying to compensate for the apathy of my legs.
I have little faith in any consultant, I have seen 3.
I wil always remember what was said at my first consult. “Mr Daly…. NOTHING will make you better!”
It’s important to remember that “Multiple Sclerosis” is not the name of the disease.
It’s only a description of the symptoms … disease unknown.
It translates as “A lot of damage” haha.

Bit like going to the doctor with a rash and just being told “It’s a rash.”
Caused by? “Umm we dunno”


b-o-b
2 weeks ago

@sigmadelta

Multiple sclerosis means multiples scars from Latin because of the scars that appear in the brain and spinal cord after an attack on the myelin.

Multiple sclerosis is not a description of the symptoms but of the visible consequences of the immune attacks on the CNS (by biopsie in the past and know on MRI). The symptoms are what pwMS experience in their every life because of these multiple scars : spasticity, muscles weakness, sensory problems, etc.

It’s not true to say the disease it’s unknown. We know a big part of the pathophysiology of the disease and most of the risk factors. We know that it is a immune mediating disease (but we are not sure it’s auto immune) where your peripheral immune cells (particularly memory B & T cells) get inside your CNS and attack the myelin of the nerves. What is true is that we haven’t identify the antigen of the immune attacks yet.

The most chocking part of your post is the one about this doctor telling you there is nothing to make you feel better. That’s not true and it’s not good to diffuse such a message.


b-o-b
1 week ago

@sigmadelta

When I say chocking I mean it’s not because of you but because of this doctor. Don’t let anyone tell you there is nothing to do.


jayjay10
1 week ago

@rob_woodhouse

Hey mate, I’m sorry to hear that you are going through all that with immense difficulties. I am unable to give much advice on this but I will try my best given past experiences. I often find that stretching can help with the immobility that our bodies/legs have, maintaining the stretches can provide the release of pain and bring flexibility to ourselves. I know that almost everyone mentions stretches but I can be quite beneficial in the long run.

Little by little could contribute to the general health which we are experiencing.

Good luck mate and I hope it all goes well for you.

Oh, I wanna get off to a winning start against Leeds. 😂

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