Leg Jerking, Don't Know Why - Any Help?

[PointNoPoint]

I did a search about this subject, but I didn't think what I found was close enough to my own situation, so I decided to post here about it.

Some background: hemorrhage in spinal cord at T-1, T-2 in 2002 from AVM, also have aneurysm at same level that has not bled. Both were embolized 7/20/06. From bleed in 2002: numbness, pain from under arm area to toes and trunk, all front and back, weakness in leg and foot, ability to feel heat and cold altered. From embolization in 2006: right side of trunk, front and back, made numb, pain. Mostly can walk okay, but need cane when walking distances or have to be on feet for extended periods of time. Have fallen a few times.

Leg jerking: I had a few incidences of my left leg jerking a few times after the bleed. But since the embolization it has escalated to happening every day, at least once.

It is only the left leg, never the right. It doesn't hurt. Once it starts jerking it will do that for anywhere from a couple of minutes to maybe ten minutes or longer. There are usually about 15-30 seconds between each jerk. It happens when I'm awake, and happens when I'm sitting up in a chair, or when I'm laying down in bed. That I am aware of, it doesn't happen when I'm sleeping.

My left leg is already very weak. By the time this jerking stops my leg feels so tired it's ridiculous. Sometimes my glutes or thigh muscles are a little sore afterwards when it goes on for a long time. I'm tired of having the jerks!

I haven't been to my PCP about it because she just bought out the family practice where she's affiliated and it now takes weeks to get in to see her (am changing docs when our insurance changes in January). I am going to be having a follow-up angiogram next month and plan to ask the neurosurgeon about this, but I thought in the meantime I'd ask members of the forum if anyone else has/has had the same or a similar situation and can give me some insight as to what is happening with my jerking leg.

Please help! :(

[SCI-Nurse]

It sounds like you have developed spasms and possibly some spasticity. This is common with spinal cord damage, although less likely with vascular causes than traumatic.

See a good physiatrist. Spasticity is good because it helps maintain muscle bulk and improve circulation, but if it starts interfering with function or safety, it may need some toning down with medications.

Daily range of motion and stretching, as well as using a standing frame and proning (laying on your stomach) some daily are also important measures to take before taking medications for spasticity.

(KLD)

[PointNoPoint]

Thank you for your input - I appreciate it.

Thankfully the jerking isn't interfering with function or safety, and I'm happy to hear I may well be able to avoid having to take yet another medication.

It's only been recently that I've heard about physiatrists, and had been thinking about going to one as soon as my insurance changes take effect at the first of the year. With your recommendation, and all the positive posts I've seen on the forums here about them, I'm now thinking it's a good idea.

I have not been doing my stretching and range of motion as diligently as I normally do as the therapeutic pool run by the hospital where I had my PT from, and my insurance covered by (water always 90º or warmer) has closed. But I do have a regimen I do at home too, so will get busy with that again. :o

One thing, though. I'm not familiar with what a standing frame is. I will try the proning in addition to my other exercise as well.

[Sue Pendleton]

It sounds like you have developed spasms and possibly some spasticity. This is common with spinal cord damage, although less likely with vascular causes than traumatic.

See a good physiatrist. Spasticity is good because it helps maintain muscle bulk and improve circulation, but if it starts interfering with function or safety, it may need some toning down with medications.

Daily range of motion and stretching, as well as using a standing frame and proning (laying on your stomach) some daily are also important measures to take before taking medications for spasticity.

(KLD)

Hi Point,
Along with everything KLD suggested some of us with non-traumatic injuuriies often get the kicking type spasms when we have infections especially bladder infections. With me a uti creates kicks only in my stronger left leg. Go figure. Might have a urine culture and a CBC blood test done by your PCP. but definitely get on a stretching schedule. Welcome to CareCure.

[David Berg]

I frequent a list with a lot of people who suffer central pain from strokes and other conditions. It's common for the folks on that list to discuss restless leg syndrome (RLS) and the challenges of dealing with it.

As Sue and KLD said, there can be a number of causes but it generally can be treated successfully.

[PointNoPoint]

Sue Pendleton wrote:
Hi Point,
Along with everything KLD suggested some of us with non-traumatic injuuriies often get the kicking type spasms when we have infections especially bladder infections. With me a uti creates kicks only in my stronger left leg. Go figure. Might have a urine culture and a CBC blood test done by your PCP. but definitely get on a stretching schedule. Welcome to CareCure.

Hi Sue,

Interestingly, just a day or two before you posted this I began to suspect that I might have a UTI. It's a little hard to tell because it's difficult for me to feel, because of the numbness. I made an appointment with one of my Dr.'s PAs and saw him yesterday. I wasn't able to give a specimen, but he went ahead and gave me a prescription for an antibiotic as we're pretty sure I have an infection going on.

Thanks for the welcome and the input. Hopefully this round of antibiotic will get rid of the kicks. If not, then maybe the new regimen of at-home, out of pool exercising and stretching will do it. No doubt that isn't going to hurt, anyway. ;)

Hi David,

I've done a good bit of researching about RLS, and read posts about it on the forums here, and I really don't think that's what it is. But, I could always be wrong!

I'll be seeing the neurosurgeon next week, and will be finished with the antibiotic by then, and I'm going to ask for his opinion, too.

I'll let everyone know if I'm still kicking after the medication (ha! ha!), and what the doc has to say.

[PointNoPoint]

Hi again,

Just an update for anyone who may be interested: clearing up the UTI did get rid of the jerking in my left leg - for a few days, and then it came back.


I had the spinal angiogram at the Barrow on the 14th and was so pleased with the results. The docs confirmed that the AVM was indeed obliterated by the embolization done in July, and said the embolization of the aneurysm is holding up well. They said with MRIs and CT scans of the aneurysm I shouldn't have to see them again for another angiogram for another three years. Yippee!!


Dr. McDougall did some neurological tests on my feet and legs in the angiosuite before beginning the procedure and confirmed that my left leg does have spasms and spacticity. He and another one of the surgeons suggested, just as KLD and Sue did, I see a physiatrist for the spasms, as well as for the bladder and bowel problems I have.


They also suggested I try to stay away from the baclofen if possible, which is exactly what I plan to do. The jerking can be annoying, but with the suggestions made here, and the help of a physiatrists, I'm certain I can deal with it just fine.


So, I'm "still kicking", and the news from my angiogram couldn't have been better. There is a Santa - or in my case Santas - and they wear scrubs and white coats! :)

Happy holidays, everyone! :santa:

[Sue Pendleton]

Happy to hear things went so well! If the spasms interfer with sleep and you are not responsible for a child's care or something similar sleep aids like Ambien help a lot with milder but annoying spasms at night. Be sure you don't need to wake to catherize because those drugs do make you sleep and with few side effects. I imagine after the symposium in Baltimore sponsored by Johns Hopkins Baclofen sales are probably plumetting. It seems my docs in Germany back in 1992 were right and it does tend to reduce or slow regeneration.

[PointNoPoint]

Bah. Since the last I posted about this subject (almost three years now!), I've developed full blown spacticity, in both legs, though it's always worse in the left. Get it in my abdomen too.

The good news is that I've been using Tizanidine HCL for some time now, and happily it allows me to (usually) get through the night without being kept awake the entire time by the spacticity. I'm so grateful. Every once in a while the spacticity is so bad that even the medication doesn't work well, but for the most part it keeps it down to the point that I can sleep better. I use it during the day as I need it (those spams can nearly land me in the floor!), but I try so hard to avoid it during the day as it makes me sleepy - already have enough fatigue, and sleepiness from other meds.

Anyway, just thought I'd update, mostly to mention the medication in case anyone else having the same problem is interested.

[quad79]

Sorry PNP, nightime spasms are the worst. One thing that has helped mine a bit while laying down is keeping my feet elevated. Of course we broke down & got the adjustable bed(2 twins that make a king). The higher I raise them the better plus every toss & turn my husband makes doesn't trigger them. I've yet to find any meds or exercises help, they just have a mind of their own. Best wishes.

[PointNoPoint]

Hmmm, I'll try elevating my feet while I'm lying down and see if it will help 0me too. Thanks for mentioning that. I'll try just about anything that isn't another drug. And how right you are - they do have a mind of their own. Sometimes I'm still surprised at how strong they can be - and that can be scary at times.

Thanks quad79. =)

[SharonD]

Hi Point,
Along with everything KLD suggested some of us with non-traumatic injuuriies often get the kicking type spasms when we have infections especially bladder infections. With me a uti creates kicks only in my stronger left leg. Go figure. Might have a urine culture and a CBC blood test done by your PCP. but definitely get on a stretching schedule. Welcome to CareCure.

Hi Sue, I am the mom of a teenage boy with a new non-traumatic SCI. Ive been reading some of these older posts and am interested in hearing more about the difference in recovery of traumatic vs non? My son was classified as a T4 complete but i saw that Dr Wise posted complet and incomplete arent as meaningful in non-traumatic. Your thoughts?

[wheels4one]

My legs jerk also, but I think that mine is restless leg syndrome.

[huckleberry]

I know nothing about your type of injury, and usually thus refrain from replying - but here goes. I am an MS Support Group leader, and many people with MS take folic acid for leg spasms. I do not understand how folic acid helps, but you might want to ask for a blood work up to see if you are low in it. YOu might also want to ask your doctor if s/he thinks it would help. HUckleberry

[Coleen]

I also have jerking hovements & spasms that are much worse - more 'strength' to the jerking & much more painful - around dinner time. I think it might be party caused (in my case) to the amount of time I've been mobile, as the more I'm up the worse it gets. Even with neurontin (sp?) it's horrible at night & often wakes me. I'm a type 2 diabetic, so along with my hyper active nerves (so I was told) this makes things worse.
I hope you find some relief, let us know if you do!

[5th Wheel]

I had non-traumatic SCI -- AVM at T6-9 level. Leg spasms are coincident w/ mild UTI and muscle sprain/strain injury. I don't feel the normal pain of sprain/stain, but for a couple weeks afterward, the jerking & spasms are definitely much worse... It's great when you're sleeping peacefully, and you wake up having just kicked a 60 yd field goal!

[Random]

How much of your legs move? Could it be clonus? Mine used to happen only with pressure on the ball of my foot, but now any little movement triggers it. My spasms never have been that close in time. Did the doctor test you by jerking you foot up relative to your ankle? I've also had it in my knees.