Myoclonic jerks question

Question

Hello,

I posted this over at neurology forum and the doctor answered by telling me the definitions for each which isn't really helpful.

Anyone experience this or know what it could be?

I've been having a problem lately (last 6 months) with RLS or Myoclonic jerks. Not sure which, but an interesting thing I noticed yesterday.

I was lying on my back with my knees up and my feet hooked under my husbands leg beside me.  Usually when my legs are out straight I will get an immense deep ache in my thighs and then my legs jump out, then I'm fine til the next one.

Well...this time since my feet were hooked under my husbands leg, my upper body spasmed instead.

So this has my thinking...is this RLS or myoclonic jerks or something totally different?  Since it cant' be pinned down to a specific body part (which I always assumed it was)

Thanks for an insight.

Corina

jensequitur · Accepted Answer

Hmmm... again, your situation sounds very similar to mine.

At first I thought I was having some sort of spinal myoclonus.  I'd get this building sensation in my torso, which would turn into a jerk of the spine.  Rather like a spine sneeze, actually -  the way the itching in your nose becomes a sneeze is very similar to the onset of this symptom.

When it was really bad, my arms would pull up into a preying mantis position.  I thought spinal myoclonus because of the description - that it's a slow onset that builds up.

Well, I did more research on it, and kept reading the We Move website about different kinds of myoclonus, trying to track it down.  I reread the information about reticular reflex myoclonus - bingo!

My most recent 3T MRI showed two lesions in my brainstem.  Damage to the brainstem can result in reticular reflex myoclonus, which involves either full-body jerks or partial jerks, like the legs.  It can also cause palatal myoclonus, which I also have.  It's the constant "thrum-thrum-thud-thud" in my ear of my soft palate twitching.  If you're not sure what it sounds like, try tensing your soft palate yourself.  

Any luck with getting your neurologist to schedule you for an MRI?  At this point it really sounds like that's your next step, but I remember that your neuro is a bit of an idiot.

drsdonthelp · Answer

As I have been reading here, I thought I'd throw this out as well. During my first pregnancy (8 yrs ago) I was lying in bed and all of a sudden both my legs flew up to my chest. I started to crack up because my husband looked at me and said what are you doing,? I was laughing and said this baby must be powerful, he must have kicked something that made my legs fly up .

Could this be what you guys are talking about? Or could a baby kick you in a spot that would send your legs up to your chest?

Corina, I apologize for asking this on your post, and good luck on finding a new neuro.
Pam

jensequitur · Answer

I started looking online because I kept forgetting to ask the doctor about something... and when I did, his answers were incomplete and contradictory.  I found out a lot more about MS just by doing online research.  This forum is wonderful - it's not as large as the MSWorld forum, but there's a lot of people here with knowledge and experience.

ccorina · Answer

Thanks everyone for your input - it's driving me crazy.  I wish I had a good doctor I could just ask :).

jensequitur - Thanks for the point in the myoclonus direction.  There was a lot of that website and the reticular reflex does sound alot like mine.

I haven't gotten an MRI yet.  I'm going to go back to my doctor and get a referral for a new neurologist.  

Corina

addicted2harleys · Answer

Today must be a learning day for me.  Thanks for posting that We Move web site.  I have been exploring around it for the last hour and it is very informative!  

Corina, maybe you will get some answers from that site, as well...

Addi

RedFlame · Answer

This is not RLS.  RLS is a painful tormented need to move your legs continuously.

Myclonic jerks are involuntary contraction of a muscle that causes a swift movement.  

It would help to know what the muscles are doing when not under your husbands

Red

HVAC · Answer

Sounds frustrating. I do not know the answer to this.

Alex

Myoclonic jerks question

burning feet and up into legs

MRI result (from Holland): white matter lesions. Could they be MS?

16 lesions found on MRI scan

Scared to death. I do not want to die in my thirties.

burning feet and up into legs

MRI result (from Holland): white matter lesions. Could they be MS?

16 lesions found on MRI scan

Scared to death. I do not want to die in my thirties.

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