before you get your seizure, do you know your going to have one ? I am an epileptic my seizures are different from yours, but are you on are particular medication ?
By the way, all my tests were always negative - hence the "Psychological Disorder" and Fibromyalgia from Cleveland Clinic. Sometimes I want to go back to all those docs and say, "See it WAS all in my head - in the BASAL GANGLIA!" But then I repent, :( and thank God that he saw fit to save a sinner such as me! Know that our Bible Study group will be praying for you!
I now have tremors, etc. now but not prior, & am only 49 - hence the 14 neuros. The Requip and Azilect only helped a little - now I am on carbadopa/levadopa for > 2 yrs,& function at home on my own. Mine is a "strange" form of Parkinson's. But I praise the Lord for the Movement Disorder Specialist - if you haven't seen one, I recommend it - you obviously :) have a "movement disorder." Thanks for adding the song-God is truly good! How do people handle diseases like this (or worse) without Him?
Your movements look SO familiar - it is what happens when my meds wear off. . When I first went to my current doc, a Movement Disorder Specialist in Pittsburgh, PA, I was off all meds- he saw only symptoms of the disease. The first thing he said to me was," Have you ever tried taking Dopamine? If it works, we know that it is under the Parkinson's umbrella." (I had 13 prior neuro docs, + others, including the psychologist :( over 25 yrs) I have now been diagnosed with Young Onset Parkinson's.
thank you also mish375, she commented earlier on your post. I cant get treatment because the neurologist say its phychological and psych say go to neurology. anyone else having trouble getting a diagnosis and getting treatment? I think requip is a dopa drug... this would make since why it works for me.
@gretchencazares Exactly.....my daughter has been seeing a psychologist since june of last year and to this day he says he cant find a reason for conversion disorder which is what the neurologist are calling this.... the are saying that all her tests so nothing...they have done mri's,eeg's,emg's,lab work,as well as nerve conduction testings and all have come out fine. She is now on 600 mg of neurontin 3 times a day as well as 20 mg of cymbalta because she also has fibromyalgia
i am so sorry you have to go through this too. Its so painful and tiring. the only thing that works is ropinole (requip) , the doc called it rls restless leg. I been told its not since then because its involuntary. but requip has and is my life saver.I also in the last 12 months developing tremors in my arms and body. this requip dosent help, do you have other body tremors.
i hope you feel better and it just goes away for you. hang in there
I have had successful releif with Mirapex (.125 mg in the morning, 3PM then 8PM ) I have MS and Myoclonus is one of my issues that is perminant. I know Mirapex is for RLS and Parkinson but my MS specialist tried a number the other meds with no impact at all. He doesn't know why the Mirapex works but he says that if works use it. I no side effects from the Mirapex other then a little slugish about 2 hours after I take it.
She appears to have dystonia. It could be a genetic type known as Dopa Responsive Dystonia. You only need one parent to carry the gene for an offspring to have it. It is treated with low dose dopamine replacement. It's symptoms appear at different stages of your life. She appears to have footdrop in the right foot from it. See a neurogeneticist for diagnosis. Then she can go on levadopa, ditch the other meds. Magnesium, found in almonds dates dark chocolate helps with spasms. I have it.
This happens some times when I try to fall asleep. I get to the point there I'm about to drift off to sleep and one or more limbs of my body twitch. It sucks!
Have you tried Medical Marijuana? I've seen it work When powerful muscle relaxors did not. It's only really practical to use it just before sleep, unless you've got a job where they don't mind you walking around baked all day, but it does ALLOW one to sleep, which, as I understand it, can be the worst aspect of this disorder, correct? It's Maddening when it keeps you awake, yeah? I'd ask my doc about it.. Good Luck!
Hello, thanks for posting. My son who is 6 has this exact same thing (but in his left leg not right), and just like you, is completely gone when he is sleeping. The twitch/jerk is almost identical as yours and is just as continuous. We just went to the orthopedist today and he has referred us to a pediatric neuro. Have you found anything out yet?
Wow, I'm sorry so sorry! I experience myoclonus jerking in my arms, legs & sometimes my neck & stomach when I try to relax. I haven't had it checked out. I have severe chronic pelvic pain & I always assumed it was linked 2 that. I asked my dr about the jerking cuz I had hit myself in the face hard enough 2 leave a knot & I've hit my bf numerous times w & dr said it is random limb movement disorder but I read about it & it didn't line up. I get so aggrivated cuz I can't control them at all.
Also, try contact such as a pillow and keep your leg/knees closer to your hips if you know what I mean. Eg I have to sit cross legged or legs bend up closer to my body because if I put my leg down it sets off my whole body and my neck flicks back etc. you could also try the NIH website or email as I did, dr Hallett even though I live in Australia. Beat wishes for some answers.
Hi, I have been diagnosed with action myoclonus and have had it for around 8 months now. I get it both legs/hips, arms (mainly left dominant hand) and torso, neck and face sometimes. I also get numbness in my hands and forearm. I have worsening attacks which look like epileptic fits and they can last for 2-3 days. I am on clonazepam which may help you, but so far I am in a wheel chair and have to sit cross legged and my initial spasms in my legs like yours changed to tonic clinic jerking. Try t
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before you get your seizure, do you know your going to have one ? I am an epileptic my seizures are different from yours, but are you on are particular medication ?
1234597850 2 weeks ago
By the way, all my tests were always negative - hence the "Psychological Disorder" and Fibromyalgia from Cleveland Clinic. Sometimes I want to go back to all those docs and say, "See it WAS all in my head - in the BASAL GANGLIA!" But then I repent, :( and thank God that he saw fit to save a sinner such as me! Know that our Bible Study group will be praying for you!
parkipaula 2 weeks ago
I now have tremors, etc. now but not prior, & am only 49 - hence the 14 neuros. The Requip and Azilect only helped a little - now I am on carbadopa/levadopa for > 2 yrs,& function at home on my own. Mine is a "strange" form of Parkinson's. But I praise the Lord for the Movement Disorder Specialist - if you haven't seen one, I recommend it - you obviously :) have a "movement disorder." Thanks for adding the song-God is truly good! How do people handle diseases like this (or worse) without Him?
parkipaula 2 weeks ago
Your movements look SO familiar - it is what happens when my meds wear off. . When I first went to my current doc, a Movement Disorder Specialist in Pittsburgh, PA, I was off all meds- he saw only symptoms of the disease. The first thing he said to me was," Have you ever tried taking Dopamine? If it works, we know that it is under the Parkinson's umbrella." (I had 13 prior neuro docs, + others, including the psychologist :( over 25 yrs) I have now been diagnosed with Young Onset Parkinson's.
parkipaula 2 weeks ago
Thats so sad :(
RandomBananaChannel 4 weeks ago
thank you also mish375, she commented earlier on your post. I cant get treatment because the neurologist say its phychological and psych say go to neurology. anyone else having trouble getting a diagnosis and getting treatment? I think requip is a dopa drug... this would make since why it works for me.
gretchencazares 1 month ago
@gretchencazares Exactly.....my daughter has been seeing a psychologist since june of last year and to this day he says he cant find a reason for conversion disorder which is what the neurologist are calling this.... the are saying that all her tests so nothing...they have done mri's,eeg's,emg's,lab work,as well as nerve conduction testings and all have come out fine. She is now on 600 mg of neurontin 3 times a day as well as 20 mg of cymbalta because she also has fibromyalgia
gaylahancock 1 month ago
i am so sorry you have to go through this too. Its so painful and tiring. the only thing that works is ropinole (requip) , the doc called it rls restless leg. I been told its not since then because its involuntary. but requip has and is my life saver.I also in the last 12 months developing tremors in my arms and body. this requip dosent help, do you have other body tremors.
i hope you feel better and it just goes away for you. hang in there
gretchen
gretchencazares 1 month ago
how did i first watch justin bieber to end up at seizures ?!
caprand1 1 month ago
thank you for the song, its "Who Am I" by Casting Crowns
ryanlee604 2 months ago
/lighters waving in the crowd with the song lyrics
Mindraker1 2 months ago
I have had successful releif with Mirapex (.125 mg in the morning, 3PM then 8PM ) I have MS and Myoclonus is one of my issues that is perminant. I know Mirapex is for RLS and Parkinson but my MS specialist tried a number the other meds with no impact at all. He doesn't know why the Mirapex works but he says that if works use it. I no side effects from the Mirapex other then a little slugish about 2 hours after I take it.
jcsmithcab 2 months ago
whats the name of this song. it sounds good
ryanlee604 3 months ago
are you okay now? pls reply
vysakhbalakrishnan 3 months ago
god help her.. u doesn't deserve this
vysakhbalakrishnan 3 months ago
She appears to have dystonia. It could be a genetic type known as Dopa Responsive Dystonia. You only need one parent to carry the gene for an offspring to have it. It is treated with low dose dopamine replacement. It's symptoms appear at different stages of your life. She appears to have footdrop in the right foot from it. See a neurogeneticist for diagnosis. Then she can go on levadopa, ditch the other meds. Magnesium, found in almonds dates dark chocolate helps with spasms. I have it.
Mishy375 7 months ago
This happens some times when I try to fall asleep. I get to the point there I'm about to drift off to sleep and one or more limbs of my body twitch. It sucks!
TheEmpowered787 9 months ago
@TheEmpowered787 U might have restless leg syndrom?
DanceLoveLily 9 months ago
Have you tried Medical Marijuana? I've seen it work When powerful muscle relaxors did not. It's only really practical to use it just before sleep, unless you've got a job where they don't mind you walking around baked all day, but it does ALLOW one to sleep, which, as I understand it, can be the worst aspect of this disorder, correct? It's Maddening when it keeps you awake, yeah? I'd ask my doc about it.. Good Luck!
smalltownrockstar97 10 months ago
Hello, thanks for posting. My son who is 6 has this exact same thing (but in his left leg not right), and just like you, is completely gone when he is sleeping. The twitch/jerk is almost identical as yours and is just as continuous. We just went to the orthopedist today and he has referred us to a pediatric neuro. Have you found anything out yet?
razzer10001 10 months ago
Wow, I'm sorry so sorry! I experience myoclonus jerking in my arms, legs & sometimes my neck & stomach when I try to relax. I haven't had it checked out. I have severe chronic pelvic pain & I always assumed it was linked 2 that. I asked my dr about the jerking cuz I had hit myself in the face hard enough 2 leave a knot & I've hit my bf numerous times w & dr said it is random limb movement disorder but I read about it & it didn't line up. I get so aggrivated cuz I can't control them at all.
z28chic 11 months ago
Also, try contact such as a pillow and keep your leg/knees closer to your hips if you know what I mean. Eg I have to sit cross legged or legs bend up closer to my body because if I put my leg down it sets off my whole body and my neck flicks back etc. you could also try the NIH website or email as I did, dr Hallett even though I live in Australia. Beat wishes for some answers.
hope2327 1 year ago
Sorry, try to look under myoclonus at the WE MOVE website. I also do not get it in my sleep by the way. Take care.
hope2327 1 year ago
Hi, I have been diagnosed with action myoclonus and have had it for around 8 months now. I get it both legs/hips, arms (mainly left dominant hand) and torso, neck and face sometimes. I also get numbness in my hands and forearm. I have worsening attacks which look like epileptic fits and they can last for 2-3 days. I am on clonazepam which may help you, but so far I am in a wheel chair and have to sit cross legged and my initial spasms in my legs like yours changed to tonic clinic jerking. Try t
hope2327 1 year ago