Aa
unintentional limb movement
My my limbs an even torso sometimes jerk wildly. My arms mostly are the culprit. The jerk either away or toward my body. Every once in awhile I end up punching my face or head. Along with the movement of my limbs is a quick hard waving motion. This is quite bothersome.
I would like to find out how common this flailing/jerking/waving among those here with MS or suspected MS.
I would like to find out how common this flailing/jerking/waving among those here with MS or suspected MS.
Hey, MacBacon!
You might remember me complaining about my weird body jerks a few months ago. They would manifest as a tingling in the spine, which then turned into a full-body spasm. I thought that I was having partial seizures at first, but then decided that it was some sort of paroxysmal dyskensia. I also have involuntary jerks of the neck, arms and legs. Most often it's preceded by some sort of paresthesia, like pinprick pains or tingling.
I asked my neuro about paroxysmal dyskensia. He thinks that my involuntary movements are actually forms of myoclonus. Dyskensia comes from damage to the basal ganglia, while myoclonus is caused by damage to the white matter tracts. Because your movements are jerky, I think you're probably experiencing the same thing. Dyskensia can force you to assume weird positions, but you'll stay in that position for a few seconds - it won't be a jerk of a body part.
You might remember me complaining about my weird body jerks a few months ago. They would manifest as a tingling in the spine, which then turned into a full-body spasm. I thought that I was having partial seizures at first, but then decided that it was some sort of paroxysmal dyskensia. I also have involuntary jerks of the neck, arms and legs. Most often it's preceded by some sort of paresthesia, like pinprick pains or tingling.
I asked my neuro about paroxysmal dyskensia. He thinks that my involuntary movements are actually forms of myoclonus. Dyskensia comes from damage to the basal ganglia, while myoclonus is caused by damage to the white matter tracts. Because your movements are jerky, I think you're probably experiencing the same thing. Dyskensia can force you to assume weird positions, but you'll stay in that position for a few seconds - it won't be a jerk of a body part.
I jerk all over and yes they are quite violent. The main thing that causes them is stress. The sress can be anything from being cold or hot, being confused, being angry, looking at our financial life, or just be upset with not having bearings or being tired all the time.
Hi Mc
your jerks do seem to be on the violent side have you talked it over with your neuro? is it what quix described? that site is very good at explaining.
I have violent jerks of my stomach that propell me forward when sitting or lying but my jerks in my legs and arms are less this sounds like dystonia like what quix mentioned but i guess lesions much be able to cause this type of trouble when they attack the right side of the brain that would cause these sx so its possible to have MS with these movement disorders like quix said.
Did you talk it over with your son's friend and your son or did you leave it?
sam
your jerks do seem to be on the violent side have you talked it over with your neuro? is it what quix described? that site is very good at explaining.
I have violent jerks of my stomach that propell me forward when sitting or lying but my jerks in my legs and arms are less this sounds like dystonia like what quix mentioned but i guess lesions much be able to cause this type of trouble when they attack the right side of the brain that would cause these sx so its possible to have MS with these movement disorders like quix said.
Did you talk it over with your son's friend and your son or did you leave it?
sam
I just got dx'd w/ MS 4 weeks ago and my step daughter (17 today) sent my husband a video of her at a neurologist because her arm was doing something that looked like a fish out of water. They are running tons of blood work and tests. I have no idea how long this has been happening or how long her episode lasted, but it was crazy and I sure hope they don't find MS in her too right after I got dx'd.
D
D
I think I might have embarassed my son. He did no act that way too much, but I know he does not talk to his friends about my health or our financial situation.
I was riding with my wife, son, and a friend of his. All of a sudden I punched my head really hard. I hurt. His friend wondered what happened. My son simply said he had a jerk. I could tell that it did bother him though.
I was riding with my wife, son, and a friend of his. All of a sudden I punched my head really hard. I hurt. His friend wondered what happened. My son simply said he had a jerk. I could tell that it did bother him though.
me too i wondered what they were called i have had 5 bouts of these all over body spasms from head to toe and i am glad to find others have experienced it as with a dx of fibro then not fibro and maybe MS i could never find anybody with fibro that had had these, mine last up to 3 weeks or or completely random and come and go but painful. not sure if this is what quix said or more monclunus will have to research this more.
sam
sam
I get these too. From what Quix just detailed from above...I'm obviously getting the Paroxysmal dyskinesias & hyperkinesias. Thanks Quix! Now I can use this info. when I see my neuro next week. ;)
~tj
~tj
Hi MCBCON,
Quix has given you great info. as usual.... Below is something i said in a previous post on involuntary movements. http://www.medhelp.org/posts/show/719208?personal_page_id=364305&post_id=post_3821642
"I am DX with MS unusual presentation w/ Painful Spasms.Paroxysmal Dyskinesia is the name the Docs use I have noticeable brain atrophy..even I could see it on my MRI
and lesions in the corpus collasum and periventricular areas.
" Paroxysmal dyskinesia is a descriptive term for the most part. For example it’s like transverse myelitis…..it can be a disease in itself, but it is also a SYMPTOM of MS as can be the dyskinesias." This is what my PA at USF said after I asked her if I could tell Docs. that I have this problem. So yes one can have Paroxysmal dyskinesias without having MS."
Diamox a drug used for high altitude Illness helped me. So you might want to try it and see if it helps. Keep on fighting the fight I know how tough it is sometimes..
Peace...
JJFL..
Quix has given you great info. as usual.... Below is something i said in a previous post on involuntary movements. http://www.medhelp.org/posts/show/719208?personal_page_id=364305&post_id=post_3821642
"I am DX with MS unusual presentation w/ Painful Spasms.Paroxysmal Dyskinesia is the name the Docs use I have noticeable brain atrophy..even I could see it on my MRI
and lesions in the corpus collasum and periventricular areas.
" Paroxysmal dyskinesia is a descriptive term for the most part. For example it’s like transverse myelitis…..it can be a disease in itself, but it is also a SYMPTOM of MS as can be the dyskinesias." This is what my PA at USF said after I asked her if I could tell Docs. that I have this problem. So yes one can have Paroxysmal dyskinesias without having MS."
Diamox a drug used for high altitude Illness helped me. So you might want to try it and see if it helps. Keep on fighting the fight I know how tough it is sometimes..
Peace...
JJFL..
It is soooo good to see you back! We have wondered if you were still with us.
I need to apologize to you. In doing further reading I found several reports of dyskinesias in MS, but it does seem that they are quite unusual and not as commonplace as I said. It just seems that if I could find a connection so easily (even if it is rare) that a neurologist could find those cases, and likely more, having vastly more resources to look to.
There is another point that I think neurologists should be considering. It is not unusual for people with MS to have other movement disorders. After all, movement disorders result from damage to specific parts of the brain. MS can damage just about any part of the brain. We have seen people with MS diagnosed with Restless Limb Syndrome. In fact this is quite common. We have seen Myoclonic Jerking described in MS. Other things we hear about frequently here on the forum include Ataxia, Tremors, and Spasticity. ALL of these things are movement disorders. I have seen reports of people with Parkinson-type movements, also a type of movement disorder.
I think we have had numerous people report that their arms or legs just suddenly fling out at times.
If the 6 movement disorders above are readily seen in MS, I hardly think that it takes a Rocket Surgeon to imagine that other movement disorders can occur. So you look at the literature and see that yes, all of these AND Paroxysmal Dyskinesias have been seen in MS. So, it makes no sense for the thinking doctor not to realize that a more unusual movement disorder can also occur in MS. It is just a matter of using one's brains.
I still think that you are having an episode of a paroxysmal dyskinesia - literally this translates to "sudden wrong involuntary movements." My reading finds that dyskinesias do occur in Multiple Sclerosis, but I was probably too hard on your neurologist. As I look very closely, there are not a lot of specifric reports of dyskinesias in MS, but the textbooks say that MS and head trauma are the two most common causes of dyskinesias that aren't caused by a genetic disorder. When they are a result of genetics they are called Primary Dyskinesias and when caused by some external (to the genes) thing they are called Secondary Dyskinesias.
This is the best page I have seen that describes Paroxysmal Dyskinesias
http://www.wemove.org/pdys/
********************************************************************
I will summarize that info here, but it will be very long.
"Paroxysmal dyskinesias are neurologic conditions characterized by sudden episodes of abnormal involuntary movements (hyperkinesias)." A few definitions here are in order:
Paroxysmal - sudden onset, unpredictable and with a relatively quick return to normal. It suddenly comes and then fairly suddenly stops.
kinesia - movement
dyskinesia - abnormal and involuntary movement
hyperkinesia - too much, exaggerated, extreme movement
Secondary Dyskinesias are described by the kind of movements that show up, though keep in mind that they can be any combination of these types.
Chorea - involuntary, rapid, randomly irregular jerky movements
Athetosis - relatively slow, writhing motions that appear to flow into one another
Ballismus - (like throwing a ball) uncontrollable flinging movements of an arm, a leg, or both,
Dystonia - increased muscle tone (stiff and writhing) with repetitive, twisting, patterned movements and distorted posturing
I am only talking about paroxysmal dyskinesias that are caused by trauma or MS (Secondary Dyskinesias). These episodes are further broken down by when they occur and what sets them off.
One type of PDK occurs when the people makes a rapid movement or gets startled. The sudden movement seems to set off the paroxysm. This is called paroxysmal kinesigenic dyskinesia ( the word kinesigenic means caused by movement).
Another tends to hapeen at rest (nonkinesigenic) or when normal movement is going on. There are also some that occur after heavy exertion (called exertional) or occurring only during sleep (hypnogenic).
All of these may be worsened by fatigue, caffeine, alcohol, stress, heat, cold, illness and other things.
Further, an episode of paroxysmal dyskinesia can be short (5 minutes or less) or long (more than 5 minutes).
***********************************************************
Here is the page to read that states that one of the most common causes of Secondary Paroxysmal Dyskinesia is Multiple Sclerosis.
http://www.wemove.org/pdys/pdys_eti.html
**********************************************************
The treatment of a PDK depends a lot on what type it is. Here is a page that discusses treatment.
http://www.wemove.org/pdys/pdys_tre.html
********************************************************
To sum this up, all kinds of movement disorders are seen in MS. Some are more unusual than others. I can find reports of all the ones I mentioned above. MCBCON, if you read the descriptions I gave above, what kind of movements fit what is happening to you?
Any comments anyone? Does anyone else recognize themselves in the descriptions above?
Quix
I need to apologize to you. In doing further reading I found several reports of dyskinesias in MS, but it does seem that they are quite unusual and not as commonplace as I said. It just seems that if I could find a connection so easily (even if it is rare) that a neurologist could find those cases, and likely more, having vastly more resources to look to.
There is another point that I think neurologists should be considering. It is not unusual for people with MS to have other movement disorders. After all, movement disorders result from damage to specific parts of the brain. MS can damage just about any part of the brain. We have seen people with MS diagnosed with Restless Limb Syndrome. In fact this is quite common. We have seen Myoclonic Jerking described in MS. Other things we hear about frequently here on the forum include Ataxia, Tremors, and Spasticity. ALL of these things are movement disorders. I have seen reports of people with Parkinson-type movements, also a type of movement disorder.
I think we have had numerous people report that their arms or legs just suddenly fling out at times.
If the 6 movement disorders above are readily seen in MS, I hardly think that it takes a Rocket Surgeon to imagine that other movement disorders can occur. So you look at the literature and see that yes, all of these AND Paroxysmal Dyskinesias have been seen in MS. So, it makes no sense for the thinking doctor not to realize that a more unusual movement disorder can also occur in MS. It is just a matter of using one's brains.
I still think that you are having an episode of a paroxysmal dyskinesia - literally this translates to "sudden wrong involuntary movements." My reading finds that dyskinesias do occur in Multiple Sclerosis, but I was probably too hard on your neurologist. As I look very closely, there are not a lot of specifric reports of dyskinesias in MS, but the textbooks say that MS and head trauma are the two most common causes of dyskinesias that aren't caused by a genetic disorder. When they are a result of genetics they are called Primary Dyskinesias and when caused by some external (to the genes) thing they are called Secondary Dyskinesias.
This is the best page I have seen that describes Paroxysmal Dyskinesias
http://www.wemove.org/pdys/
********************************************************************
I will summarize that info here, but it will be very long.
"Paroxysmal dyskinesias are neurologic conditions characterized by sudden episodes of abnormal involuntary movements (hyperkinesias)." A few definitions here are in order:
Paroxysmal - sudden onset, unpredictable and with a relatively quick return to normal. It suddenly comes and then fairly suddenly stops.
kinesia - movement
dyskinesia - abnormal and involuntary movement
hyperkinesia - too much, exaggerated, extreme movement
Secondary Dyskinesias are described by the kind of movements that show up, though keep in mind that they can be any combination of these types.
Chorea - involuntary, rapid, randomly irregular jerky movements
Athetosis - relatively slow, writhing motions that appear to flow into one another
Ballismus - (like throwing a ball) uncontrollable flinging movements of an arm, a leg, or both,
Dystonia - increased muscle tone (stiff and writhing) with repetitive, twisting, patterned movements and distorted posturing
I am only talking about paroxysmal dyskinesias that are caused by trauma or MS (Secondary Dyskinesias). These episodes are further broken down by when they occur and what sets them off.
One type of PDK occurs when the people makes a rapid movement or gets startled. The sudden movement seems to set off the paroxysm. This is called paroxysmal kinesigenic dyskinesia ( the word kinesigenic means caused by movement).
Another tends to hapeen at rest (nonkinesigenic) or when normal movement is going on. There are also some that occur after heavy exertion (called exertional) or occurring only during sleep (hypnogenic).
All of these may be worsened by fatigue, caffeine, alcohol, stress, heat, cold, illness and other things.
Further, an episode of paroxysmal dyskinesia can be short (5 minutes or less) or long (more than 5 minutes).
***********************************************************
Here is the page to read that states that one of the most common causes of Secondary Paroxysmal Dyskinesia is Multiple Sclerosis.
http://www.wemove.org/pdys/pdys_eti.html
**********************************************************
The treatment of a PDK depends a lot on what type it is. Here is a page that discusses treatment.
http://www.wemove.org/pdys/pdys_tre.html
********************************************************
To sum this up, all kinds of movement disorders are seen in MS. Some are more unusual than others. I can find reports of all the ones I mentioned above. MCBCON, if you read the descriptions I gave above, what kind of movements fit what is happening to you?
Any comments anyone? Does anyone else recognize themselves in the descriptions above?
Quix
I have spoke with Quix about this jerking. She said that my neuro is either not being straight with me or his practice is too small.
Thanks, I am undiagnosed also... my jerks are very strong, almost knock me out of my recliner. I suppose I should check with my Neuro............he did say they were myoclonic jerks so I just figured that was how hard they were....
Thanks
Tracy
Thanks
Tracy
Some of these might be attributed to 'myoclonic jerks,' which can be common in MS. The extent of the jerking and flailing you are speaking about is very worrisome. I have never heard of this happening to the degree you are talking about. Especially with the force that you are explaining.
These are very spastic movements, above and beyond anything I have experienced in my long journey with MS. Could this be a seizure related disorder? I have certainly seen it to this extreme, in cerebral palsy patients. But as I understand it, CP doesn't just "appear" out of the blue.
Hard spasms like this, are not unheard of in MS. Just ask our precious Shadow'sSister. But repetitive, jerks like this, need some serious investigation. I wish I could come up with some explanation that could help you.
If Quix were online, I am sure she might be able to answer this more fully. She may have seen this kind of thing in her pediatric practice.
I will see if I can do some online research for you. I hate feeling like such a dumb a**.
I am so sorry you are going through this, McB.
I hope someone on the Forum can help with this, if not another doctor you could go to.
Best Wishes,
Heather
These are very spastic movements, above and beyond anything I have experienced in my long journey with MS. Could this be a seizure related disorder? I have certainly seen it to this extreme, in cerebral palsy patients. But as I understand it, CP doesn't just "appear" out of the blue.
Hard spasms like this, are not unheard of in MS. Just ask our precious Shadow'sSister. But repetitive, jerks like this, need some serious investigation. I wish I could come up with some explanation that could help you.
If Quix were online, I am sure she might be able to answer this more fully. She may have seen this kind of thing in her pediatric practice.
I will see if I can do some online research for you. I hate feeling like such a dumb a**.
I am so sorry you are going through this, McB.
I hope someone on the Forum can help with this, if not another doctor you could go to.
Best Wishes,
Heather
It is very irritating and sometimes I hit my head ect. My Neuro calls it Myochlonic jerk, hope I spelled that right, not sure if yours is the same thing. However, mine is not restless legs, it is totally different. You might want to check on that? Again I was told it is common with neurology issues. I have seen other posts about this also.
Hoping you find relief.
Tracy
Hoping you find relief.
Tracy
I want to make a point here. My ex-neurologist has seen restless leg syndrome though. But, nothing to do with arms or anyghing to wild, only trouble at night when trying to sleep.
>My ex-neurologist said he never heard of this symptom as one of MS and that not any >of his other MS patients have ever complained of this problem.
>My ex-neurologist said he never heard of this symptom as one of MS and that not any >of his other MS patients have ever complained of this problem.
Thanks for your reply. I want to know how common this jerking, flailing is with MS.
My ex-neurologist said he never heard of this symptom as one of MS and that not any of his other MS patients have ever complained of this problem.
My ex-neurologist said he never heard of this symptom as one of MS and that not any of his other MS patients have ever complained of this problem.
Hi
I am not dx but being retested again for MS some time soon i hope, but i get this rather vilolent jerking at times.
I also get body spasms in bouts 5th bout just finsihed 3 weeks ago top to toe all of my muscles just contracting painfully up to 3 weks or a few days.
The jerking is worse when i am tired.
i am sure others will post.
hope this helps are you dx??
sam
I am not dx but being retested again for MS some time soon i hope, but i get this rather vilolent jerking at times.
I also get body spasms in bouts 5th bout just finsihed 3 weeks ago top to toe all of my muscles just contracting painfully up to 3 weks or a few days.
The jerking is worse when i am tired.
i am sure others will post.
hope this helps are you dx??
sam
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