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1530566 tn?1316213207

Is this MYOCLONUS???

In July 2009 I took my daughter to the ER because her right leg was jerking and her toes were tingling and numb. they admitted her for observation and discovered that her muscles on her right side were very weak. She started Physical Therapy, first the pool, electric stimulation and then land therapy. She seem to be doing very well and the jerking had stopped after only 9 hours at the hospital. Now on Nov.20th 2010 the jerking came back. This time it is more severe, still in the right leg and she is having pain and numbness in her toes. The pain is from her hip, groin area and down her calve. She was admitted once again and this time they did an MRI as well as an EEG. They said the only thing that showed up in the previous year and this year was a small blood vessel near her spinalchord, however  it had nothing to do with this and was not causing the jerking.Four different Dr.s said this is Myoclonus however when the pediatric neurologist came in he said it was not but it was a tick. He placed her on valiium, and clonodine and sent her home. We have seen the neurologist one other time since November and he changed her medicine to xanaflex and clonodine, she is now on iron and tylenol 3 for pain. He still insist that this is a tick. However, it has been over 30 days, the jerking has not stopped, she is now in physical therapy and according to them her pelvis has been raised and is pressing towards her left side. her pediatrician wants to send her to the Movement disorder center for further testing and is insisting this is myoclonus. He is aggreeing with the other Drs. dispite of the neurologist. My child only jerks when she is awake until her body cant take it anymore and she collapses due to the tylenol 3. Once she is sound asleep the jerking stops. However any movement in her sleep or when she is trying to wake up the jerking starts again. She gets maybe 20 seconds if that inbetween each jerk.
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Avatar universal
Wow, my son is 6 and about 6 months ago I noticed he had twitches in his left leg that seemed to happen while he was laying down and relaxing, it appeared to me as an involuntary movement that would force him to stretch his foot downwards, but at the time it concerned me slightly but I tried to not make anything out of it. Than about a month ago, out of nowhere he started limping complaining from pain in his ankle and lower shin area on his OTHER leg. Over this past month, it has gotten so bad that he cannot run or walk without this dramatic limp in the one leg, than on his other left twitch leg it has gotten worse to the point that he actually trips because of the sudden extension of his foot while he is walking or running, because the foot catches the ground. The limp seems to get worse the more active he is.

His jerk symptoms in his left leg occur when he is sitting, when he walks, stands, lays, and happens every couple of seconds nonstop, but decreases greatly when he lies on his back with his leg up and bent at the knee, with foot planted on the floor. Than just like your daughter, it completely stops while he is sleeping, and symptoms are nearly gone.

I am taking him to an orthopedic specialist in a week and praying this is not a lifelong affliction to a boy who is extremely active and loves sports more than candy.
Helpful - 0
1168938 tn?1327154232
Hi
I find it hard to cope with at 49, so it must be terrible at 13, you are going through enough at that age without health issues. It must be hard for you aswell to see your daughter going through this.
I would consider taking her back and trying to alter her medication as at the moment its not helping her, it can take time with different people to find the right dose to help. As I say I take clonazepam, I've been offered sodium valproate but I prefer not to take too many tablets if I can cope, so for the time being I'm sticking with clonazepam, as long a I get a good nights sleep I can cope better with the jerking.
I suffer constant pain, I think it's because your muscles are working constantly i.e tightening up and releasing, my heart goes out to you and your daughter.
Take care
Suz
Helpful - 0
1530566 tn?1316213207
yes you can add me and my daughter is 13....they havent stopped at all with her they are everyday since nov.20th. It doesnt matter if she is sitting, standing, or laying down. Even when she is in the pool with therapy her leg still jerks. she is very upset over this and she has pain with hers. She isnt even in school right now since this has happened she is getting home bound.
Helpful - 0
1168938 tn?1327154232
You are more than welcome, I've found a lot of support on here and you know what they say what goes around comes around.
I never asked how old your daughter was, I started with this out of the blue 4 years ago at the ripe old age of 45 but I have friends on here one is 21 and like me she started jerking for no reason.
I have had jerks every day from the onset, sometimes they are constant and other times they are intermittent, I've had months of non stop jerking and then it settles down for a few days and I'll get maybe 100 in a day on a good day maybe between 20/30. When they are constant it is soooo stressful and I don't know whether to sit, stand or swing from a tree... I'm sure you understand where I'm coming from.
I'll add you as a friend if you are interested in keeping in touch.
All the best
Suz
Helpful - 0
1530566 tn?1316213207
Thank you for talking to me, actually its all three, the walking and standing isnt as bad as sitting and laying down and it only happens when she is awake. when this first started it was just sitting and laying down and now that its been over 30 days of non stop jerking its even when she walks. We are waiting to hear back from a movement disorder center and hopefully we will hear back from them today. I will keep you informed as to what they say. Thank you Again
Helpful - 0
1168938 tn?1327154232
I have 2 forms of myoclonus, startle myoclonus and spinal myoclonus. Can i ask when she jerks is she sitting, laying down, stood up or is it all three. Mine occur when sitting and laying down, also when I am asleep, very occassionally when I'm standing.
It is possible that this is myoclonus, I suffer pain and a buzzing vibration from my backside through both legs.
I would certainly take the opportunity to see a movement specialist with her, if it was a tic I think she would be able to stop the jerking by concentrating.
Myoclonus is not pleasant, I've had it for 4 years now and it drives me round the twist, I take clonazepam to help me sleep but it doesn't really help stop me jerking it just makes me tired.
I wish you well with her and hope you get some answers.
Take care
Suz
Helpful - 0
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