Forum

Spasms and convulsions query...

Hi - can anyone tell me about their spasms and jerks please?

How often do you get them? When do you tend to get them? How do they present/what do they feel like? Do they ever go into convulsions? What is normal in a relapse without medication for them?

Thank you!

Hi Deb, I dunno what everyone else calls a spasm, but mine are like severe cramp. In fact, they ARE cramp. They feel exactly the same as a normal cramp, before I got ill, except I now get them more frequently, more severely, and in more parts of my body. If I get a very bad one, it’s not only extremely painful, but I sometimes lose voluntary control of the affected limb - usually my leg. Can’t move it properly, can’t bear weight on it, toes might be moving about by themselves, that sort of thing. Afterwards, the limb might be extremely tired, and ache - sometimes for a couple of days. In my own case, I don’t think they have any connection at all with convulsions. I’ve never had a convulsion, I’ve never thought I was having one. During what I call a “spasm”, my mental functioning and state of consciousness are completely unaffected. It’s purely a physical problem - well, I suppose the distress it prompts is mental, but apart from that, I mean. Some bit of me just gets very painful, and refuses to do what I want for a while. Tina

Hi

I get different types of spasm, all with their own feelings and own causes, and all in my legs. Generally there’ll be a feeling in my calf, either a sort of tension, or a pain in a specific part of my calf. This will lead to a sudden jerk which I can feel building up. It’s usual just a single jerk, but sometimes it can be a few in very quick succession.

As for their causes, I get one in my left calf which I know is linked to my bladder is a bit painful, and I know will probably be relieved by going for a pee. And I get another in my right calf which can be quite a strong jerk, and is caused by my foot or calf being too cold. So for that one just gently warming up my foot can help. I can get another one in my right calf which can come if I’ve been on my feet a lot and so the leg gets very tired, and that one only comes at night. That can be helped just by gently massaging and stretching it.

Other than that, I take baclofen and gabapentin when I go to bed, and they’ll usually do the trick if nothing else has helped.

Hope that helps.

Dan

My spasms are of the twitch/jerk variety rather than cramps. At their worst (pre medication), my legs, arms and stomach would all jerk at once or one after the other a maximum of maybe two or three times. When I first got them they were painless. Over time, they usually began with a sharp, neuropathic shooting pain somewhere in my body (not necessarily the bit that jerked). I often feel a kind of “build up” in my body, so the jerks are like a sort of electrical discharge or something. They were most common when I was at rest, so sitting or lying down, especially in the evenings.

I wouldn’t describe them as convulsions. They looked a bit like mini epileptic fits at times, but very short ones (lasting seconds only).

Karen x

Hmm Karen, thank you - that is an exact description of what I experience. Dan -mine are definitely worse when my bladder is full as well.

The only bit that tightens on me is my abdomen, the rest of me jerks, sometimes just my head and shoulders, sometimes my right arm and sometimes just my calves. I’ve also had 4 occasions of a combination of the whole lot with smaller jerks all over and tummy tightening. All of this has only been happening for a week and a half now but getting incredibly frequent and even 3 times in a car journey of 15 minutes. Terribly embarrassing when sat in staff meeting!

Last night for the first time my left hand clenched into a tight fist for a few seconds.

I’m very interested to hear more stories…

When i get spasms i sometimes scream out they are that bad,they leave me sore for days too,thankfully i dont get them that often, and i hope they dont become more frequent either, because i would rather be in labour than have them.

jaki xx

Hi Deb

I often get cramp in my feet especially if I have been on them for too long. If it’s just the toes, I can just stretch them out and ease it quite quickly but the really painful ones affect the whole of the sole of my foot and there is nothing I can do except massage it and wait for it to pass. I can feel the tension building and if I stop and rest I can sometimes prevent it coming on so badly. I also get spasms in my calves and they might ache for quite a while afterward but since taking up yoga this happens less often.

I did have really bad spasms down my left arm prior to a relapse affecting that arm (well, probably the beginning of the relapse which I didn’t realise). I had been getting l’Hermittes, the electric shock sensation when I lowered my chin, which ran down my spine and ended in my hands and feet. It triggered a spasm in my left arm which sometimes resulted in my left hand getting stuck in a claw position and I remember having to ask my son to help me take my sweater off a few times because, for me, it helped if I could cool down. Shortly afterwards I had neuropathic pain in that arm which kept me awake at night for 2 weeks and a really heavy, stiff arm and hand, and even now my left hand has very little feeling so I think the severe spasms were part of the relapse.

They aren’t pleasant and I agree that they are very embarrassing when they happen in a public place. My son does now accept that sometimes I have to sit on the floor wherever we are and sort out my feet!

Tracey

I also get spasms/jerks or as I call them my little jumps. They scare other people when they occur. Since taking Clonazapam they have eased up a lot, but had to increase the dosage slowly. I would be up in the wee hours of the night trying to get to sleep, each time my eyes shut my legs, arms and trunk would all jerk at the same time. I was totally exhausted and desperate for sleep. I still get the jerks but not as often. I also would get a shooting pain, anywhere in my body, sometimes I would get a funny tingle in my stomach or my feet would feel like pins and needles. I just take it as normal now, but having said that it is painful. Hope this helps.

Janet x

Thanks for all these comments, they’re really helpful - Janet, that’s exactly what I’m like. I’m jerking so much, probably 40 a day and it’s exhausting. I’m moving onto more tightenings as well now.

Bl**dy fast progression seeing as I’d never had these at all three weeks ago! Is that usual in your first big relapse?? At a guess I’ve had quiet/benign MS for years and now it’s WHAM! I’ll be on meds soon so hopefully that will help.

xx

My jerks came on over a period of time, in a way it was quite funny as I worked in a hoispital on a ward as the ward clerk and one day I was sitting down and suddenly out of the blue my arms, legs, and trunk all jerked at the same time. Unfortunately for me one of the nurses who knows me well said quote “What the b***dy heck was that?” unquote. I said oh you know me, just one of my funny moments. Eventually I had to retire, I just couldn’t keep the pace up any longer. They organised a leaving do for me and lo and behold I was sitting next to another nurse and suddenly my arm decided to have a go and I hit her so hard on her arm.I couldn’t say sorrow enough, but thankfully she understood. I had hoped that by being on Clonazepam the jerks would stop completely but they still happen. I am now awaiting a letter from my consultant neurologist who said she is going to jiggle my tablets around, so hopefully if I jiggle I won’t jerk!!! Just don’t give up.

Janet xx