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Sorry if this is a silly question?

Dear All, sorry if this is silly. For two days, whenever I rest or sit down, my left leg has been shaking by itself. It stops for a moment when I change position and then starts again. It is tiring especially at nighttime. Is this what people call spasms? Thank you, much love ali x

I always get confused by the term spasm or spasticity. My consultant says both symptoms can basically be rolled into one family of MS symptoms . What you describe is something I frequently get and when I’ve asked the same question at my MS clinic I usually get the same answer, “the jerking/shaking can be classed as a spasm”. Basically the nerves are getting scrambled signals so the leg(s) start to jerk, shake, spasm. I think you’ll get a slightly different answer depending on who you ask and how their symptoms might of been explained to them. For me I class a spasm as something that happens suddenly by itself, you cant really stop it completely, moving around helps a little bit, but its still going to happen until the nerves settle back down. I regard a spasms as jerking/shaking or sudden single sharp movements. Spasticity I class as stiffness/heaviness, not being able to move freely, unbalanced, a bit like being in a swimming pool in deep water and your trying to walk normally but the weight and pressure of the water is forcing against your legs, the more you try the more unbalanced and weaker your legs become. Somedays you can multiply that feeling tenfold. Hope this sort of explains how I see things.

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Hi Ali,

There is no such thing as a silly question. Silly people are the one’s who don’t ask questions at all.

I think jactac’s answer is spot on. What you describe are called spasms. The scrambled signals, which get sent to the muscles, can cause involuntary movements, floppiness or for them to become rigid.

I have been prescribed Dantrolene sodium (Dantrium) which I find very effective at stopping my spasms. Other people use a magnesium supplement, readily available from supermakets and health food stores.

Best wishes,

Anthony

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I get periodic shaking in one leg or both… I stem this ms nerve spasm, by pressing firmly on the particular leg & this usually calms the spasm & leg / legs stop shaking.

It’s just another of the annoying ms symptoms. The brains nerves react… like wires getting entangled in the telephone exchange!

Take care…

ms dizzy.

I think everyone is right. Jactac has what I think the most comprehensive answer. Dizzy has an excellent solution. Sadly it wouldn’t work for me. Other people manage stretching routines that do a good job of naturally sorting out naughty legs.

The problem with a lot of the drugs for spasm and spasticity is that they can cause weakness, and a certain amount of stiffness is required if you expect to stand at all. Which is why Baclofen (the most common drug for spasm and spasticity) doesn’t work for everyone.

Baclofen does work for me. I still wake in the night with my legs in full on spasm mode, and regularly wake up in the morning with whole body spasms. Dantrium is metabolised by the liver, and so I can’t take it (a history of my liver throwing a hissy fit). So I’m glad Baclofen does work. Also Cloneazepam does a good job, but it’s sedating so best taken at night.

I’ve been taking Magnesium Glycinate for a couple of months at night for the spasms but it’s doesn’t seem to work. Many people use magnesium topically, oil or cream for spasms / restless legs. I’m too nervous to try it as my skin is far too sensitive. Plus, I need FES electrodes to stick to my skin.

So I’m sticking to pharmaceuticals.

I hope you find a solution for yours Ali.

Sue

Thank you all. Today the shaking stuff continued in my leg all day and sadly to my right arm and hand which stopped me doing things. I slept all day too…I mean, from 11.15 until now, after 7 in the evening and I am still so tired. I never really believe that I have RRMS because this is a new thing and the symptoms just keep coming. Or Could this be a relapse? Four weeks back at work, I am exhausted, somewhat stressed and even more so now! Could it all, just be tiredness? Any advice so welcomeMuch love x

Hi Patience,

I too get really annoying spasms in my legs and lately, shooting pains in lady bits (ouch) so can empathise with you. Am nt diagnosed yet but have neuro next week - I too feel confounded having had one symptom after another for over a year, new one, old ones coming back, more new ones, same ones on opposite side of body … and it goes on!!

Sorry I have no real advice though, hope you get some respite from it soon x

Minnie

Hi Ali

To me, it sounds like a relapse.

This is a feeling we often have when RR, that ‘could it be progressive?’ When symptoms never seem to stop, or they diminish a little, then come back with a vengeance, new things happen, the fatigue just fells us.

And gradually, relapse symptoms do improve. One day you suddenly realise the pins and needles you felt aren’t there any more. Or, the completely banjaxed fatigue is improved.

I remember thinking ‘it could be progressive’ about 10 or more years ago. It wasn’t. And in fact, even though I’m now deemed to be progressive, and have been for the last couple of years, I’ve recently had a clear relapse, new lesions, remission and all.

So, don’t be too quick to think about progression. And don’t forget that once you are labelled progressive, you don’t qualify for DMDs any more (makes no difference to me, too many side effects have ruled the majority or even all of them out). So stick with the thought that it’s relapsing remitting.

Talk to your MS nurse about what you’re experiencing, it could be that s/he can offer some helpful suggestions, eg drugs that you could ask your GP for. Or an expedited appointment with your neurologist to discuss drug treatments. You could also perhaps benefit from some physiotherapy. Perhaps your MS nurse can refer you?

MS is of course, as you are discovering, a ridiculous disease. We are human, therefore we try to put it in boxes. And attempt to make sense of it. MS will not stay in it’s correct boxes. And it makes no sense at all. MS does what it likes, whensoever it likes.

You do need to be able to let go of your natural desire to control it. Give in to MS. It does you no good to fight it. If MS tells you to sleep all day, then do what it says. If it says, I want some drugs to make my nerves stop jumping around, give them to it. If it tells you to learn some stretching exercises to help, learn them and do the exercises. This doesn’t mean putting it first everytime, it’s about accommodating the bloody disease.

I hope this wretched period you are having to live through calms down soon.

Sue x

My main consultant has now started labelling my MS as “SPMS WITH Relapses”.

I always thought it was just RRMS that had relapses ?

Another consultant that I saw when mine wasn’t available sent a follow up letter to my GP saying I was “Transitional” ?

My MS nurse says “its difficult to give a definitive title” !

My wife has many labels for me, but this is not the place to bare all

Ssssue pointed this out last week after she spotted this article; Multiple Sclerosis Research: PPMS v RRMS what's the difference?