Does ALS twitching come and go?

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peanut78

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I have been twitching widespread for about 21/2 months now. More recently I've had some localized spots that can last for days. My questions is, with ALS do your twitches come and go, or when they start in one place do they keep going nonstop until the muscle atrophies? Thank you for your help.
 

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i'm don't know what you mean by "come and go", but my twitching is like this:

(maybe i should preface this by saying i'm not 100% sure i've got als (is anybody?) but i've checked negative for lyme and everything else and they have put me on riluzole, even though i never asked for it)

-mostly in the left arm (muscle atrophy is most severe in the left hand)
-lots in the shoulder area. one little muscle or another is almost always jumping there.
-twitches in the upper chest, upper back, legs occur, but not so often
-mostly it's not a continuous back & forth, just a jump here, then a jump there. occasionally one will repeat. repositioning the affected area seems to reduce twitching.
 

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I have been twitching widespread for about 21/2 months now. More recently I've had some localized spots that can last for days. My questions is, with ALS do your twitches come and go, or when they start in one place do they keep going nonstop until the muscle atrophies? Thank you for your help.

For me they come and go. Some days nothing Pat
 

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My physical skills come and go as well. (I always think this is a good thing, proves no ALS for me, I say.) But some days I am not strong enough to climb stairs, do straight leg lifts, hop on either foot, or jump. Those are the days I stumble a lot. Other days I can do all of the above. And sometimes I can do it all at one point of the day but not another. I have given up trying to figure it out. After all, at my age I doubt I need to be able to play jump rope much!
 

Al

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As far as I know with real ALS once they start they don't stop until the muscle is gone. That's what's happening with me. They tell me my ALS is the real McCoy although possibly a strange variant.
AL.
 

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I was surprised to read that your twitches are constant, AL. Mine aren't. When the 2nd neuro I went to pointed them out to me in my arm I had never noticed them. Since then I have had intermittent twitching of fingers where finger acturally jumps about for a while, off and on twitches in arms, legs, face especially above upper lip, and torso. They might last just minutes or hours.
 

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My fasciculations sometimes annoy me when I'm trying to go to sleep. I used to sleep with my arm under the pillow, but now the twitches are too noisy in the stillness of the night. Medication was offered, but I declined--I'll fall asleep soon enough if really tired.

Occasionally I get that weird creepy feeling like you get after walking through a spider web. I wonder if that is some kind of micro-micro-fasciculation?
 

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Haven't posted in a while

I've got the real deal. Fascics constant now, did not used to be. Came and went with stress. I know the creepy feeling, get it usually when I've overdone it.
 

peanut78

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Thank you for your responses. I started out wtih all of a sudden, widesperad twitching. Now it is more localized and i'm really worried. I've had a constant twitch in my right hand for 3 weeks, off and on. I did have a normal EMG, but only 2 weeks into bodywide twitching. So I am more worried about these more localized, constant ones now.
 

peanut78

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Well other than twitching I just have what I guess would be called "perceived weakness". But the twitching just keeps worsening, which I know in some cases can be the first symptom.
 

AHands

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hmmm...for me, the symptom that sent me to the dr was my thenar (thumb) muscle wasted away. prior to that i had problems with the joints on my fingers occasionally locking up. twitching came much later. relax. fasciculations (twitching) is usually harmless. even if it is ALS, which seems not likely, theres really no action required--observe, get tested for lyme, hiv, syphillus, etc... but fasciculations alone shouldn't be much worry. google "benign fasciculation syndrome".
 

CindyM

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My joints on my hands lock up also. Haven't heard anybody else mention that.

I think we covered this before but I have a question: what is the difference between a cramp and a spasm? When I lie down to go to sleep every muscle in my body tightens up so bad that it is very painful. In the morning, I have to force my eyes open, my chest and trunk muscles hurt, and my legs and arms are stiff. Is this cramping or something else?
 

AHands

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My finger joints used to lock up, but now that they've atrophied, locking-up ain't an issue!

I think a "cramp" is what happens when you contract a muscle voluntarily, but it refuses to relax. I don't get them upon awakening, but if I stretch my legs or arch my feet then they cramp. If I bend my arm in an unusual position (e.g. behind my back) it might cramp. If I sneeze, my abdomen muscles often cramp. The muscle feels real hard, won't let go, painful but...somehow...induces a feeling of panic, even if i'm expecting the cramp.

I think a "spasm" would be an involuntary contraction--kinda like a twitch or fasciculation, only with much larger muscles. Like if your arm suddenly kicked out or went up involuntarily.

The fasciculations on the other hand are tiny little muscles that you wouldn't know how to actuate if you wanted too--any more than you could wiggle your ears. My arm kinda looks like theres little snakes crawling around inside it sometimes. I keep thinking this could make for a great halloween costume! :)
 

CindyM

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Thank you. That is very clear. I think I will increase my quinine to see if that helps. I am sitting here at my desk today and the muscles in the right side of my trunk seem to have a life of their own!
 
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