Status
Not open for further replies.

ktmj

Distinguished member
Joined
Oct 17, 2008
Messages
421
Country
US
State
Dixie
City
Redneck
I have written before about the jerking of my arms/shoulders. It is almost out of control. Some days it is non-stop throughout the day, originating in my chest muscle (pecs), shoulder, bicep, tricep. It does not move the whole arm wildly, but it certainly moves the arm. People have noticed it through my clothing, especially when the whole arm gets pulled.

Right now I'd say it is going at the pace, on both sides, of 40-75 per minute.

This is way bigger than a fasciculation or muscle twitch. Anyone else experience this and can it be controlled?
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
ktmi ... I experienced that on my left arm when I began taking Rilutek. That's why I stopped taking it. It built up slowly over a month, getting stronger and stronger twitches, and the last day I took the pill, my whole left arm was visibly shaking and jerking. I couldn't type with it, etc.,etc. I discontinued the med and the jerking stopped.

I don't know if this is any help, but I do know exactly what you're talking about. Hope you get an answer ASAP.
 

olly

Extremely helpful member
Joined
Jan 10, 2008
Messages
2,732
Reason
PALS
Diagnosis
11/2007
Country
uk
State
uk
City
uk
jeff,if you are indeed having myoclonic jerks that bad then you would need to go to a+e or a doctor asap,but i really dont think that you are.
no disrespect but i have suffered from myoclonus for 9yrs and at one time they were going to give me epilepsy drugs,mine have been real bad sometimes but not 40-75 per minute. even in the most severe myoclonus it would be no way near that.
mine effect mainly one side of my body and the whole one side of the body or a limb jerks,but odd occasions they have effected my whole body.
when bad ,like after having a seizure i have had to lay down and feel ill.
if you were really that bad with myoclonus you would not be able to do anything and be quite ill.
are you on any new meds? are you really stressed?
i dont mean to be rude,just telling it as it is
 

ktmj

Distinguished member
Joined
Oct 17, 2008
Messages
421
Country
US
State
Dixie
City
Redneck
I don't know if it is myoclonic jerks or just hard twitching, but it is very noticeable to me and many times to people around me. Like I said it is not one that flails an arm out or anything like that, but it will pull my shoulder forward or backward, flex my pecs (which isn't all bad but folks think I am trying to show off :p:p), or something noticeable even with a shirt on.

It has been doing it off and on a for a few weeks, and it seems like the intensity is increasing. No new meds.

I called me neuro today - he is setting up an appointment with another neuro in his group that specializes in the stuff I have been experiencing (WTHeck! why wouldn't he do that a long time ago?) It is Monday, which is pretty quick considering the holidays. I'll just impress my wife with the pec flexing until then.

Please, don't ask for videos.:lol::lol::lol:
 

olly

Extremely helpful member
Joined
Jan 10, 2008
Messages
2,732
Reason
PALS
Diagnosis
11/2007
Country
uk
State
uk
City
uk
hello again.
to me what you describe sounds like a severe case of twitching.
from what i experience with myoclonus it generates from a reflex point.
for instance my right leg will shoot up in the air from the knee(focal reflex clonus)not good when you are standing:shock:
if i experience it in my right side of the body or whole of the body i can feel something in my spine like something snapping just before the jerks,myoclonic jerks are very forcefull and leave you tired.
great to hear you got an appointment so quick,please let us know how it goes.
i hope you will be ok till then,enjoy the holidays but dont eat or drink too much:p

ps........spoil sport........i wanted to see the video of your rippling muscles!
 

ktmj

Distinguished member
Joined
Oct 17, 2008
Messages
421
Country
US
State
Dixie
City
Redneck
Yeah, if not for the other stuff I would happy to be the be the biggest twitcher around.

Merry CHRISTmas Olly.:smile:
 

CB1977

Distinguished member
Joined
Aug 29, 2008
Messages
210
Country
US
State
oh
City
columbus
I might be wrong but from what I have read severe/hard twitching is a hallmark of BFS and and not ALS. I read that on a link that either Beth or AL posted a while back. I also did some reading on Cleveland Clinics website (the ALS page) and they said the same thing. So, that might be a good sign, not a bad one. BFS gets worse with anxiety, stress, and physical activity as well and can cause muscles to fatigue easily.

CB in Ohio
 

crystalkk

Very helpful member
Joined
Sep 11, 2007
Messages
1,210
Reason
Learn about ALS
Country
US
State
pennsylvania
City
philadelphia
Ktmi,

What are your other symptoms?
 

ktmj

Distinguished member
Joined
Oct 17, 2008
Messages
421
Country
US
State
Dixie
City
Redneck
Hmmm...

Weakness (subjective but real) in legs and arms
Atrophy (subjective but real) in legs and arms
Coordination issues (fine skills in arms and large in arms/legs)
Cramps
Severe tightness in head/face/jaws/neck at times
Twitches in tongue, throat and everywhere else at times

But I still walk, talk, breathe, and work, so it can't be all bad, huh? And I'm serious about that - I know I am blessed today even though I am in limbo on what is causing all this.

Must be all in my head according to the neuros.

p.s. I've had benign twitches for 20 years - that is the very least of my concerns. If I had just twitching I'd be doing cartwheels. Oh, and I've been extremely active up until a few months ago. Much else now sends everything into overdrive.
 

awieleba

Very helpful member
Joined
Apr 28, 2008
Messages
1,023
Country
US
State
michigan
City
oakland twp
myoclonus,

I am not sure if I have a slight case of it. Mine are more like a limb jerking when you fall asleep but I am awake. Mainly in my arms or legs, sometimes in my stomach. It is not as intense as carloline. It seems that in the start of this, it was all the time and know it is not as much. But, I think I get use to things. Very subtle for me.

It sounds like what you have is form of a twitch. I get those big ones in my thighs, that you can see through the clothes. Not too often, but it comes and go's.

I agree, if all I was twitching I would do cart wheels and play tennis!

Peace & hope

april
 

ktmj

Distinguished member
Joined
Oct 17, 2008
Messages
421
Country
US
State
Dixie
City
Redneck
I was laying in bed this morning just trying to take it easy before work, and my pecs were jumping like crazy - hard twitches that would move my arm. My wife even noticed - it woke her up as I was trying to snooze. It would move to my shoulder occasionally and my biceps would get in on the action.

This is nuts!

Again, don't request videos - not sure your hearts could stand the excitement.:D:D:D

p.s. Just trying to use some humor to get through through the stress!
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
myoclonus, seizures or what?

Hi, ktmj ... I'm having 2 weird movement problems right now and am not sure what's going on. (Neither is the neuro). The first type wakes me up in the middle of the night (in deep sleep ... my neuro wanted to know what stage of sleep I'm at when it happens).

Twice last summer, I woke up with my arms violently crossing across my chest (like I was trying to hug someone but hard). My right leg would jerk straight out, then my arms would go back and forth, back and forth, then my leg would jerk again, and then the arms. I believe my torso was in on the action, too. It scared the **** out of me because I couldn't make my arms stop doing that.

Except for the arms, I wouldn't have worried ... would have chalked it up to restless leg syndrome, where your leg jerks when you're falling asleep.

It happened twice last summer, and then three nights in a row last month. My 2 neuros at UCLA are calling these "seizures," and are scheduling MRIs and CT scans, etc.

The second weird thing is "lapsing out." (That's the only way I can describe it.) I start to walk somewhere and find myself (seconds? minutes?) later "coming to" standing in the middle of the room staring into space. The really odd thing is that it happened a couple days ago, and I "came to" standing in the kitchen leaning on a counter and holding my left leg up about 2 feet from the floor. Have NO IDEA what was going on, or why I was standing with my foot in the air, or how long I had stood there.

Hopefully, with some more tests, more will be revealed. :)

Dang nab it, I forgot we weren't going to mention symptoms for 3 days so Al could enjoy a holiday free from all this. Sorry Al!

Carpe the friggin' Diem, Everyone
 
Last edited:

awieleba

Very helpful member
Joined
Apr 28, 2008
Messages
1,023
Country
US
State
michigan
City
oakland twp
Beth,

better not sleep next to you! LOL! Hope your husband was ok...no black eye's?
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Carpe the friggin' Diem, Everyone
LOL, Beth. You certainly have a way with words! :lol:
 

shelly2612

Distinguished member
Joined
Aug 31, 2008
Messages
103
Reason
CALS
Diagnosis
09/2008
Country
US
State
Ohio
City
Waterloo
Lapsing Out

My husband diagnosed 9/2008. He has found himself driving and it seems all at once he comes to himself and doesn't know where he is. He has to look for landmarks to see where he is. He says its like he blacks out and sometimes this last for a few miles, then he just wakes up. It is really weird, it has happened while I was with him and he will start looking around and then he might ask where are we, He only drives now if he has a companion.
 
Status
Not open for further replies.
Top