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


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Old 08-15-2014, 10:40 PM #1
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rachaeltowne rachaeltowne is offline
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Default Myoclonus?

Hello I'm new here,

I'm female and 41 yrs old.

10 years ago I started occasionally getting these sudden "jerks" in my lower trunk area, like lower back and hips. I only noticed them when at rest, but not sleeping. For example, if I was reading or watching TV. Sometimes I would get several in a day, sometimes none.

This has continued off and on all of these years and I have never brought it up with a doctor. I've always assumed they had something to do with the two herniated disks in my lumbar spine. I also have arthritis in all of the facet joints in that area.

Recently, as in a few weeks ago, these jerks started happening all over my body! The lower back/hip, legs, arms, shoulders, hands and feet. Most of the time they are not extreme movements. I can definitely feel and see them, but most of them are not noticeable to others. Last night however, I experienced two very dramatic leg jerks that would have definitely been noticeable to someone, had someone been in the room with me. It felt like a strong electric shock and even hurt a bit.

Also, about a week ago, my right thumb started doing this rapid uncontrollable tremor whenever I would bend it. This only lasted for 2 days and stopped.

I also recently experienced a very uncomfortable eye twitch that lasted for 6 months! My eyeball actually ached and seemed a bit blurry through most of this time. This did finally stop. Again, I didn't go to the doctor. I know I should have, but I am stubborn and hate spending the money.

From what I'm reading, I'm experiencing mostly myoclonus. I'm now pretty nervous since my mother has ms, and I know these things can have a genetic component.

I'm working on getting some insurance so I can get this looked into, but in the meantime, any thoughts?

I should mention that I do take Lexapro and Wellbutrin for depression. However, when all of this started I was not on any meds. The back/hip jerking has happened whether I'm on meds or not.

I do think it's possible that the problem is made worse by the meds, but I took various antidepressants for several years in my early 20s, with no side effects like this whatsoever.
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Old 11-10-2014, 10:51 PM #2
Rio1 Rio1 is offline
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Originally Posted by rachaeltowne View Post
Hello I'm new here,

I'm female and 41 yrs old.

10 years ago I started occasionally getting these sudden "jerks" in my lower trunk area, like lower back and hips. I only noticed them when at rest, but not sleeping. For example, if I was reading or watching TV. Sometimes I would get several in a day, sometimes none.

This has continued off and on all of these years and I have never brought it up with a doctor. I've always assumed they had something to do with the two herniated disks in my lumbar spine. I also have arthritis in all of the facet joints in that area.

Recently, as in a few weeks ago, these jerks started happening all over my body! The lower back/hip, legs, arms, shoulders, hands and feet. Most of the time they are not extreme movements. I can definitely feel and see them, but most of them are not noticeable to others. Last night however, I experienced two very dramatic leg jerks that would have definitely been noticeable to someone, had someone been in the room with me. It felt like a strong electric shock and even hurt a bit.

Also, about a week ago, my right thumb started doing this rapid uncontrollable tremor whenever I would bend it. This only lasted for 2 days and stopped.

I also recently experienced a very uncomfortable eye twitch that lasted for 6 months! My eyeball actually ached and seemed a bit blurry through most of this time. This did finally stop. Again, I didn't go to the doctor. I know I should have, but I am stubborn and hate spending the money.

From what I'm reading, I'm experiencing mostly myoclonus. I'm now pretty nervous since my mother has ms, and I know these things can have a genetic component.

I'm working on getting some insurance so I can get this looked into, but in the meantime, any thoughts?

I should mention that I do take Lexapro and Wellbutrin for depression. However, when all of this started I was not on any meds. The back/hip jerking has happened whether I'm on meds or not.

I do think it's possible that the problem is made worse by the meds, but I took various antidepressants for several years in my early 20s, with no side effects like this whatsoever.
Wow, where to start? First, I'm glad I came upon your post. I am 42 years old and have suffered from myoclonus since I was eleven. I have PTSD from what occurred the day it reared it's ugly head until now. I have horrible startle responses, myoclonic jerking, spasms, occasional trouble speaking audibly, even walking is sometimes stiff or feels like a weight is pulling me down from moving forward. Even exercising gets impeded. The worst part is that the drug that seemed to more or less alleviate the symptoms for about 10 years is now looking like it's going to be a thing of the past. No, I'm sorry, the worst part is that I now have panic attacks due to the myoclonus. As in PLEASE DON'T LOOK AT ME in public. Or, "care to take a video and post it on youtube?"

I once heard about Tourette's Syndrome, "The good news is you won't die from it. The bad news is that you won't die from it." While I don't have Tourette's, this is bad and getting worse.

The sucky thing is this--it mostly occurs under stress. Right now, typing away, nothing. Not a single twitch, jerk, spasm, etc. Trying to do a precise movement in public? Completely different person.

I was on absolutely no medication when this happened, but it HAS gotten worse with SSRI's. Absolutely, no doubt, worse. Don't let the doctors fool you--SSRI's can have a dopaminergic effect and send your neurotransmitters into a frenzy. Ask the doctors, before they give you all the "data", if they are on or have ever been on your medication. I'll bet you not one single doctor has. I tell my doctor to start checking out the blogs on the internet to get his information on the side-effects of the drugs he prescribes and stop believing the big pharm companies' lies. We, the people on the prescriptions, will tell them the truth. Big pharm? Never.

I don't talk about my myoclonus with friends AT ALL. I keep it to myself. If they notice it, they don't tell me. I certainly don't tell clients (I'm mostly drugged anyway, so it's harder for them to notice). The only ones who know my woes are my family and husband.

While our condition sucks, sucks, and sucks some more, it is good to find others like us out there. It is a very isolating condition. I know I don't know of ANYONE that has myoclonus.

I hope you'll keep in contact. I wish you the best.
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Old 02-20-2015, 08:48 PM #3
john1947 john1947 is offline
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Originally Posted by Rio1 View Post
Wow, where to start? First, I'm glad I came upon your post. I am 42 years old and have suffered from myoclonus since I was eleven. I have PTSD from what occurred the day it reared it's ugly head until now. I have horrible startle responses, myoclonic jerking, spasms, occasional trouble speaking audibly, even walking is sometimes stiff or feels like a weight is pulling me down from moving forward. Even exercising gets impeded. The worst part is that the drug that seemed to more or less alleviate the symptoms for about 10 years is now looking like it's going to be a thing of the past. No, I'm sorry, the worst part is that I now have panic attacks due to the myoclonus. As in PLEASE DON'T LOOK AT ME in public. Or, "care to take a video and post it on youtube?"

I once heard about Tourette's Syndrome, "The good news is you won't die from it. The bad news is that you won't die from it." While I don't have Tourette's, this is bad and getting worse.

The sucky thing is this--it mostly occurs under stress. Right now, typing away, nothing. Not a single twitch, jerk, spasm, etc. Trying to do a precise movement in public? Completely different person.

I was on absolutely no medication when this happened, but it HAS gotten worse with SSRI's. Absolutely, no doubt, worse. Don't let the doctors fool you--SSRI's can have a dopaminergic effect and send your neurotransmitters into a frenzy. Ask the doctors, before they give you all the "data", if they are on or have ever been on your medication. I'll bet you not one single doctor has. I tell my doctor to start checking out the blogs on the internet to get his information on the side-effects of the drugs he prescribes and stop believing the big pharm companies' lies. We, the people on the prescriptions, will tell them the truth. Big pharm? Never.

I don't talk about my myoclonus with friends AT ALL. I keep it to myself. If they notice it, they don't tell me. I certainly don't tell clients (I'm mostly drugged anyway, so it's harder for them to notice). The only ones who know my woes are my family and husband.

While our condition sucks, sucks, and sucks some more, it is good to find others like us out there. It is a very isolating condition. I know I don't know of ANYONE that has myoclonus.

I hope you'll keep in contact. I wish you the best.
Hi,
I came down with myoclonus after a epidural shot for my L5S1 disc.THE SHOT WAS VERY PINFUL,DOC SAID i DIDNT NEED PAIN MED,TOTALY UNESSASARY,A TOTAL JERK.It started with arm jerks now I get them and also cant walk well,lately I get awful feeling when wlking,Sometimes it goes away for a week,few days.I also have PD but the jerks are rare with PD.My docs seem to keep looking at the PD but cmon 1 week after the shot have others had the same thing.
I know how this condition can affect you .pLEASE CONTACT ME TO SHARE.
JOHN.
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