Last reply 1 year ago
new annoying symptoms but trivial really

Hi everyone Iv started randomly kicking my legs out without wanting to and have no control over this, its started to happen fairly regular when im lying down in bed or walking about its not sore in any way just annoying but i can see the funny side of it any tips to stop this? And any tips on how to sleep as I can stay awake for days at a time without feeling tired and its probably not doing me much good despite not feeling tired, thanks for any advice 🙂

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rachaellouise
1 year ago

@ms-man – just wish I saw the funny side of it like you . I have burning legs and feet and it’s keeping me awake too . So I’m with you on not sleeping … just wanted to let you know your not alone .
Is that like restless leg syndrome ?


cherish
1 year ago

@ms-man

Good morning to you.

My Neurologist calls mines spasms.
My Rehabilitation consultant calls it Clonus.

Tbh, they can call it what they like 😂
I’m on a number of meds for it.
But I’ve had a recent addition… Clonazepam.
I’m not saying it fixes it but it certainly tames them and helps with sleep.

Maybe you don’t want meds for It though?

I always do a little bit of stretching when it begins, but not sure if that helps neither.

The laugh I get from it is when my other half wakes me up and says “Lisa, can you please stop kicking me as I have to put my arse at your legs so I can protect my bits”.

😂😂😂
Gotta laugh.

Hopefully you will find something that helps.


mmhhpp
1 year ago

I I also have clonus and spasms at night, my legs have their own life ….. in my case , I have an electric bed , and I find sleeping with them bent don’t go into so many spasms.

Also magnesium chloride helped a little bit with the spasms and night

Take carexxxx


Anonymous
1 year ago

Thanks for all the comments,I will also ask my MS nurse when i see her next year,I just hope that I never randomly kick anyone when Im outside by accident because I doubt other people would be too understanding 🙂


poppy12
1 year ago

Hi @ms-man

I had upper body jerks for a while and hard as steel back muscles (probably Copaxone side effect), I’ve been on and off on Magnesium, which seems to help a bit but I guess the question is how bad things are. Fingers crossed the kicking will go into remission soon and completely 🙂

I’m with you on the sleeplessness, too. Brain just not switching off and dead tired but in the fast lane involuntarily during the day. This subsided after 3 or 4 weeks, too. Real issue was that the nights were so bloody boring, lying there and not being able to switch off.

Meditation + Audio books helped but don’t start fiddling with anything that has a screen as the blue light from the screen seems to destroy sleep.

Take care, poppy


nutshell88
1 year ago

Hi try to oil them make them slidy hehe
also oil your feet up down not sre if men like to do these things. but od course after you oil botton of your feet dont walk before you wear socks or anything.
and this advice is not from experience to be honest.


Anonymous
1 year ago

lol im just a typical guy and never bother about oils, maybe soaking myself in too many hot baths just about every day have made my MS trigger these crazy symptoms or maybe i just need to get used to these new bizarre things MS throws at me 🙂


david_mann
1 year ago

Mine started about two months ago, only in bed at night. I have found that raising the quilt off my lower legs seems to help, so at the moment sleeping with 2/3 of a large box at the end of the bed. It appears to help, so for me it the apparent cause is legs getting too hot and raising the quilt helps.


Anonymous
1 year ago

I might try take a football into my bed so I can score a few+maybe nutshell88 could donate some oil for my legs so I can perform some slide tackles! 🙂


merfield
1 year ago

Hi @ms-man, I get it but one leg at a time and not every night…. so it keeps me guessing. Whichever leg is performing, it suddenly kicks out then it rests and then it does it again and so forth. I try making it do it and I think it shames it into stopping. But joking apart – it’s annoying. Keep smiling …..xx


mermaidia11
1 year ago

I get it too mate – it’s really annoying for sure
Having a good stretch before bed and when u get up helps loads
Mine do it sometimes when I’m stood up – which is most inconvenient – but they have calmed down since I’ve been on LDN! Whoop

…must have been a witch in a previous life cos they still feel either like I’m sittin in icy water, or burn !


Anonymous
1 year ago

@mermaid11. I asked to get prescribed LDN after reading some reviews on it but doctors+MS nurses refused to prescribe it even though I was willing to pay for it myself on private prescription they both said LDN was placebo and not proven, so copaxone was my choice and its been good so far.


mermaidia11
1 year ago

Glad you have had good result on Copaxone! We e all different and the trick is to keep doing what works for us!
Sorry you didn’t getto try LDN though . It is off licence you are right, this is because it isn’t licenced for MS.
Or any autoimmune illnesses, because no one can afford a drug trial.
I got a private prescription off my GP, and got a personal letter from him thanking me for introducing him to a breakthrough in medical care ‘as big as the discovery of penicillin’ he sent it to Scotland dicksons chemist, who dispensed it and posted it back.
There is plently of drug trials (and the results) out there now that hqve benn published in low key medical journals
Dr Bahrai conducted the first trial after many positive anecdotes of improvements in quality of life and extension oh life.
So it’s been passed round neurologists by word of mouth and used extenively, building evidence of its healing and helping.
I get that o lot of people feel nervous of taking off label meds and I wouldn’t be banging on about it if it hadn’t genuinely helped me
Just sayin… will shut up now
Take care x


Anonymous
1 year ago

@mermaid11 I really did fight to try get on that treatment to no avail,I even tried to join a new gp surgery in another town a 5 minute drive away from myself which did prescribe this drug for MS patients but they wouldnt accept me as a patient despite only being 5minute drive away!! , a GP in that town was raving about that treatment in the tabloids, now im stuck with a GP practice that never believed anything I ever said for several years, and they dont have a clue bout relapes or MS, but luckily capaxone has been good for me so far 🙂 x


mermaidia11
1 year ago

Gosh I didn’t realise. It’s bordering on a breach of human rights, to prevent you from making a decision to try an off label drug.
I’m sorry the GP surgery with the forward thinking GP didn’t have room for you on their books, your current surgery sounds jam packed full of idiots frankly and this illness is difficult enough to travail, without having a lack an understanding or knowledgable ‘medical team’

Thankfully, the LDN research trust may be able to help you
They arrange appointments for you to have a consultation with a prescribing GP. There’s a few near you mate, and they can also do it over Skpe.
Then u can get it dispensed in Scotland and get goin having a go. You know quite quick wether it’s working too.
As soon as they hear you have MS, I’m sure they will give you a prescription…..

And for our overseas friends, there is a network of GPs throughout the world who will this can be done with – America, Australia, italy, Saudi….

Good luck mate x
(Where there’s a will, there’s a way eh? )


Anonymous
1 year ago

thanks for that message about LDN, because im now on copaxone and its doing good iv decided to let go of the LDN idea, as for my GP practice I refuse to go near it now, if i put my trust in them id be dead already lol, I remember getting a letter from GP practice inviting me to go there for an annual MS review pmsl, I told them I wont be going near them but I hoped that the doctors learned something about MS and enjoyed their meeting and that I would send them a tea+ biscuits for their meeting lol 🙂 x


mermaidia11
1 year ago

I get what you are saying smiler, but bear in mind LDN is primarily utilised by supporting the immune systems of people having chemo and radio, so don’t discount it just yet?
It’s a tiny dose which is safe and non toxic, it doesn’t react with any other meds and is an easy liquid to take.
Copaxone is in the same family as chemo and does the same thing, so I’d say ever more reason to try, not less.

I’m sure even just talking it through with the ldn research trust would be helpful ? You have nowt to loose…

It sounds like you don’t trust your medical team after some bad experiences.
If u have enough of your plays with the copazone then I understand, but I do think it’s not a case of one or other, it’s a case of one can suppprt the other?

If u google ldn and cancer or ldn the documentary, then u might get my drift? I don’t want to attempt to explain it. I’ll leave that to the experts!

Be well mate
✨💕☮️🌈🧜‍♀️


mermaidia11
1 year ago

Duh have enough on your plate I meant!!

Ps I dread to think what happened with the med team at the surgery, yes steering clear anc sending them some tea and biccies is sometimes all we can do..(I know where they could put em too lol)

. I hope your neuro team and MS nurse better…, Having spirit is a much underrated help to .MS!
Glad u still have yours mate! I sometimes think it’s half the battle

Take care n stay warm x


Anonymous
1 year ago

neuro team and MS nurse a billion% times better,so its not all that bad and they are the ones I need to rely and trust in most of all 😀 x


mermaidia11
1 year ago

I get that you trust your MS team and it’s good that you do. However, given the worldwide evidence and research papers offering proof that LDN works, it’s a contradiction and untrue to say ‘it’s the placebo effect’ in this case.
Personally, after 3 days I couldn’t believe how much better I felt physically and mentally.

The LDN research trust is a very informative website and has all the clinical trials published there.
And therein lies the evidence that it’s not just ‘the placebo effect’

The have an advice line to discuss any questions anyone has, so better than taking advice from a random scouser for any interested peeps.

but I understand where you are coming from entirely
. I just wanted to share what has put the spring back in my step as it were and offer further intel for those interested.

Good luck to everyone on their journey

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