Movement Disorders Including essential tremor, dystonia and Restless Leg Syndrome (RLS).


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Old 11-09-2008, 11:16 PM #1
deadlysauce deadlysauce is offline
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Question Possible myoclonus??

Hello everyone. Hoping maybe someone has had a similar experience to me and may be able to help. I'll be trying to see a doctor this winter, but for now I'm doing my own research. Here's the deal:

I'm 20, female, vegan for 9 months (I'm on B-12 supplements and also eat a fairly varied diet.) Symptom onset 10 1/2 months ago, so it is NOT related to diet/nutrition. So please don't tell me to get more protein/iron/B-12 because I get it. I was on 10 mg/daily of Lexapro (SSRI) from January-September 2006. I was also on Librax, Aciphex, and Zelnorm, all for stomach conditions, around the same time, but stopped them within 9 months. I haven't heard any lasting side effects from the stomach meds, but I have heard of SSRIs causing long-term neurological symptoms.

But basically in January, after sitting slouched in a chair playing a video game for 3-4 hours, I had gone to bed and while I was laying on my side my lower back jerked, pulling my bottom away from my body. Just once. I figured it was just from sitting for a while and it didn't happen again that night. The next night it happened 2-3 times, not really rhythmically, but within a minute of each other. This progressed, every night, for 4-5 months, until I would jerk 1-2 dozen times a night. In June I started to work 2 jobs, one on my feet (retail) with no heavy lifting or any particular strain, and an office job where I sat at a desk. I only mention this because I was more tired than usual and I began getting twitches the same way in my neck and the same one in my lower back but during the day now. Usually only when sitting, but if I was really tired it would happen while I was standing. Ever since, I've been twitching throughout the day, though it changes in frequency. If I am really focused on things I don't twitch as much. When I am really tired it is worse.

So I can usually feel when the twitch is coming, once it starts. That is, if I twitch once, I can be aware of a growing discomfort (almost like a light static electricity sort of...) and hold back the twitch for a little bit, but usually the twitch that gets out in the end is stronger. I find that if I am talking or moving it suppresses the twitching, and as soon as I stop moving it gets worse. Now, it's not super frequent to the point of being really obvious. In fact, no one has mentioned it at all, and my parents haven't noticed, although I am away at school. I was home all summer with this and they didn't say anything...

I have taken some video that captures what it looks like, just look up the username deadlysauce on YouTube and see my 2 videos.

I have no family history of Tourettes, Parkinsons, or Huntingtons. There IS, apparently, a family history of dementia (possibly undiagnosed Alzheimers) but that's 3 generations back...my grandparents are all pretty much okay in terms of neurological health. My maternal Aunt (by blood) has Multiple Sclerosis, and my mom has a tentative diagnosis of Fibromyalgia. Otherwise, no health issues even remotely related to the brain or nerves.

So I am thinking this is spinal myoclonus, possibly caused by straining my lower back that one day, as it is the only event that can be connected directly to the onset of the twitching. But like I said I will try to see a doctor and hopefully get a referral to a neuro or something.


Thanks in advance for any and all help!! Please check out my videos if you want to see the twitching. YouTube/deadlysauce

--Sarah
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Old 11-10-2008, 12:37 AM #2
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Hello, Sarah, and welcome to NeuroTalk!


I did try to look up your video on YouTube, but the advanced search didn't allow me to look up your username. Could you provide a link?


I hope you'll be able to get some answers soon. Strange symptoms indeed.
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Old 11-10-2008, 05:57 PM #3
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Originally Posted by Twinkletoes View Post
Hello, Sarah, and welcome to NeuroTalk!


I did try to look up your video on YouTube, but the advanced search didn't allow me to look up your username. Could you provide a link?


I hope you'll be able to get some answers soon. Strange symptoms indeed.
Ummm, I can't post a link because I haven't made 10 posts yet, but just do youtube/deadlysauce

Thanks
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Old 12-08-2008, 05:00 PM #4
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Originally Posted by deadlysauce View Post
Ummm, I can't post a link because I haven't made 10 posts yet, but just do youtube/deadlysauce

Thanks
I found your profile on youtube but I can't find the video link either. I don't know if you are still having problems but I wanted to share there is something called Tardive Dystonia or Dyskinesia that can be caused by long term use of some meds.

"Tardive dyskinesia is a neurological syndrome caused by the long-term use of neuroleptic drugs. Neuroleptic drugs are generally prescribed for psychiatric disorders, as well as for some gastrointestinal and neurological disorders. Tardive dyskinesia is characterized by repetitive, involuntary, purposeless movements. Features of the disorder may include grimacing, tongue protrusion, lip smacking, puckering and pursing, and rapid eye blinking. Rapid movements of the arms, legs, and trunk may also occur. Involuntary movements of the fingers may appear as though the patient is playing an invisible guitar or piano. "

Hope that helps.
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Old 12-09-2008, 08:43 AM #5
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I'm sorry that you are going through this , I really hope things get better for you soon and that you get some much-needed help.

I also have Myoclonic jerks/spasms in my left leg, mine however are caused by a neurological condition called Complex Regional Pain Syndrome. I have tried SO many medications including Propranolol, Baclofen, Diazepam and many more to try and get rid of them but nothing has helped so far. My Neurologist is now thinking about trying Keppra (which is used quite a lot in people with MS and Parkinsons Disease) to see if that will try and help.

Here's a video on YouTube of the spasms in my leg: http://www.youtube.com/watch?v=xIXakErNBpE

Are your spasms similar to these?? I tried finding the link to your video but couldn't find it unfortunately.

I hope you get some much-needed answers soon and if you have any questions, I am here for you.
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Old 12-12-2008, 07:15 PM #6
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Originally Posted by ali12 View Post
I'm sorry that you are going through this , I really hope things get better for you soon and that you get some much-needed help.

I also have Myoclonic jerks/spasms in my left leg, mine however are caused by a neurological condition called Complex Regional Pain Syndrome. I have tried SO many medications including Propranolol, Baclofen, Diazepam and many more to try and get rid of them but nothing has helped so far. My Neurologist is now thinking about trying Keppra (which is used quite a lot in people with MS and Parkinsons Disease) to see if that will try and help.

Here's a video on YouTube of the spasms in my leg: http://www.youtube.com/watch?v=xIXakErNBpE

Are your spasms similar to these?? I tried finding the link to your video but couldn't find it unfortunately.

I hope you get some much-needed answers soon and if you have any questions, I am here for you.
Wow! That surely is a lot to deal with, considering your young age. You really made me think hard. Continue to hang in there and remain tough.
If it's any consolation, you're not blind. You can appreciate the beauty of life. That it's all a matter of perspective.
Also, I've read a person who was born without arms and legs. You could just imagine how that person handled life.
Anyway, keep strong.
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Old 02-21-2009, 01:51 AM #7
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Default spinal myoclonus

Hi I have spinal myoclonus. It causes involuntary spasms in my neck, shoulders, arms. It is extremely painful and results in quick arm movements and jabbing pain in my neck. I have tried everything without success until recently. I have gotten some relief with accupuncture and biofeedback. Be careful who you go to for accupuncture and be sure that person is very well schooled in the authentic Chinese ways. I went to one who was not and it was hell. I am also drinking Chinese herbal med tea twice a day and that seems to help. Good luck. Topsie



Quote:
Originally Posted by deadlysauce View Post
Hello everyone. Hoping maybe someone has had a similar experience to me and may be able to help. I'll be trying to see a doctor this winter, but for now I'm doing my own research. Here's the deal:

I'm 20, female, vegan for 9 months (I'm on B-12 supplements and also eat a fairly varied diet.) Symptom onset 10 1/2 months ago, so it is NOT related to diet/nutrition. So please don't tell me to get more protein/iron/B-12 because I get it. I was on 10 mg/daily of Lexapro (SSRI) from January-September 2006. I was also on Librax, Aciphex, and Zelnorm, all for stomach conditions, around the same time, but stopped them within 9 months. I haven't heard any lasting side effects from the stomach meds, but I have heard of SSRIs causing long-term neurological symptoms.

But basically in January, after sitting slouched in a chair playing a video game for 3-4 hours, I had gone to bed and while I was laying on my side my lower back jerked, pulling my bottom away from my body. Just once. I figured it was just from sitting for a while and it didn't happen again that night. The next night it happened 2-3 times, not really rhythmically, but within a minute of each other. This progressed, every night, for 4-5 months, until I would jerk 1-2 dozen times a night. In June I started to work 2 jobs, one on my feet (retail) with no heavy lifting or any particular strain, and an office job where I sat at a desk. I only mention this because I was more tired than usual and I began getting twitches the same way in my neck and the same one in my lower back but during the day now. Usually only when sitting, but if I was really tired it would happen while I was standing. Ever since, I've been twitching throughout the day, though it changes in frequency. If I am really focused on things I don't twitch as much. When I am really tired it is worse.

So I can usually feel when the twitch is coming, once it starts. That is, if I twitch once, I can be aware of a growing discomfort (almost like a light static electricity sort of...) and hold back the twitch for a little bit, but usually the twitch that gets out in the end is stronger. I find that if I am talking or moving it suppresses the twitching, and as soon as I stop moving it gets worse. Now, it's not super frequent to the point of being really obvious. In fact, no one has mentioned it at all, and my parents haven't noticed, although I am away at school. I was home all summer with this and they didn't say anything...

I have taken some video that captures what it looks like, just look up the username deadlysauce on YouTube and see my 2 videos.

I have no family history of Tourettes, Parkinsons, or Huntingtons. There IS, apparently, a family history of dementia (possibly undiagnosed Alzheimers) but that's 3 generations back...my grandparents are all pretty much okay in terms of neurological health. My maternal Aunt (by blood) has Multiple Sclerosis, and my mom has a tentative diagnosis of Fibromyalgia. Otherwise, no health issues even remotely related to the brain or nerves.

So I am thinking this is spinal myoclonus, possibly caused by straining my lower back that one day, as it is the only event that can be connected directly to the onset of the twitching. But like I said I will try to see a doctor and hopefully get a referral to a neuro or something.


Thanks in advance for any and all help!! Please check out my videos if you want to see the twitching. YouTube/deadlysauce

--Sarah
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