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Blizna

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I know twitching/fasciculations was examined on this site pretty much but I couldnt find one important thing: how strong those are?
I often read with ALS twitches are gentle, fine...thats why I created this topic - mine are sometimes pretty strong, visible through clothing, making whole muscle to "move" (but it is fasciculation - visible "strip" of muscle).
Thanks for your experience
 

Blizna

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50 views and no reply? :( I would like to hear your experiences..thanks
 

BethU

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Ok, I'll reply, but "strong" and "gentle" are individual perceptions, and there's no "twitch scale" as there is for pain. So I'll make one up. On a scale of 1 to 10, 1 being "no sensation at all" and 10 being "leaping out of your chair screaming," this is what I've got.

Some of mine are very tiny (on my tongue and around my mouth) and I do not feel them at all. Scale: 1.

Some are larger but very gentle. I can see them if I stare at a location, but I do not feel them. Scale: 1.

Some others I can feel, but they are very gentle. Scale 1.5.

Hope it helps. :)
 
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rose

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I have a wide range from barely there to so strong (in my legs) its like a mouse is inside trying to pop out. I've asked both my neurologist, and the director of the ALS clinic at Hopkins about the significance of these and the different types I have, and they both were very specific that:

#1, no one truly understands why fasciculations even occur, (and this statement is from the best of the best in the field)

#2 Someone with benign fasciculations can have strong ones or weak ones, and the type they experience does not mean that they are pathological rather than benign. It is not the type of twitch that means it is a bad twitch or just an annoying twitch.

:smile:
 

Al

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The reason as of today 84 views and only 2 answers is that there is no answer for your questions. These nice ladies are guessing as this is the only way to answer your questions. They are also telling you their perception. How much does a toothache hurt? How much does a migraine hurt? Same type questions. No real answer. My pain is not your pain and neither are my fascics.

AL.
 

Blizna

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Well,
but stenght of twitches can be compared, i.e I said mine are often so strenght that they are visible through clothes, they move them a bit. Other ones arent. I mean, have anybody got so strong ones too?
 

lydia

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Blizna,

I experience a wide variety of twitching "strengths". I have my butterfly kisses; they are faint, soft, fleeting. They are named after a type of kiss my children did while small: putting their face close to mine and fluttering their eyelashes on my cheek. I loved that! Anyways, I have my ghost pokes; my best description is that of a ghostly apparition leaning over with a crooked long index finger and quickly and lightly pressing that finger tip to my skin and then swirling away. A single press. Imagining the ghost messing with me is just for my own amusement. Then I have the thumpers; these are pretty big and they tend to last a long time-from several minutes to hours. They are visible through an ordinary layer of clothes. If they are in hand or foot they will move a finger or toe. If I have the kind that you don't feel but can see, I have never noticed.

I have had these for almost two years and I don't let them bother me aside from the sometimes distraction of the ghost and the potential self-consciousness from the thumpers if they are in certain spots (like my butt!).

Lydia
 

Blizna

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Lydia, but you werent diagnosed with ALS, if Im correct. I mean, I have read that large, strong twitches are not typical for als (no rule of course), but that als comes usually with slight twitching. So Im intersted how much true is that.
 

rose

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Blizna...the bottom line is that the type of twitch is not significant.

Neurologists do not fully understand why they occur. People with benign or pathological can have similar or dissimilar types of fasciculations. The type of fasciculation is not part of the diagnositic process for ALS.

The only part of understanding the advancement of ALS in someone that has definite MND, is, when there are pathological fasciculations, they are a manifestation of lower motor neuron involvement rather than upper motor neuron. i.e. its not the type of twitch, but that it is there. This is almost verbatim to what my neurologist explained to me, and she is mostly involved in research, is widely published, and would know, if anyone would, about this subject.

Hope this helps put it in perspective.

I do have a higher percentage of slight twitches (by far) than the more violent ones, but that's just me.

You said yourself in your most recent post in this thread, that you've read that one type is more typical than the other, but then you followed it up with the statement of "(no rule of course)" so really, you've answered your own question. There are many other symptoms that help to determine what someones problems are stemming from than dwelling on fasciculations, or the type they seem to be.

I feel like you're trying to draw reassurance that because you have what you feel to be stronger ones, that this is an indication that you do not have ALS. A more important way to find comfort that you're not facing this, is that (I think) you'd said you didn't have atrophy, I don't remember if you have weakness, but I'm thinking you don't feel like you do,.

Most importantly, you doctor was comfortable with just an X-ray, not wanting to pursue it as far as an MRI even. This should give you confidence, and if it doesn't, perhaps you should seek out another doctor for a second opinion.

take care:smile:
 
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Jennifer51

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strength of twitches

I agree with all the others, the strength is your own perception...I also agree with one comment that it is like a mouse inside you...I have described my twitches to my famuly as ...at their worst, as having about 100 mice running around inside of me...and THEN a couple of huge rats as well. I have had the most awful HUGE ones from my knee up to the top of my leg, looks like the indentations are about 12 inches long and at least 1 inch deep, and kept going for ages...forunately I dont get too many of those, but I get plenty that people can see thru my clothes...nothing new there...
 

Marjorie R. Wilcox

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twitches

Are these twitches you speak of the same as clonus? I am just learning the meanings and differences of each. My husband Rick is a PALS and me his CALS. His two big toes bob up and down when he sits in his recliner chair with the footrest up. The toe of his right foot goes up and down pretty fast with a rhythm, and the left one goes up and down slower.... I say that the left one keeps the beat. If he looks at them, they stop. If he isn't looking, he doesn't even know they are moving.... so they keep it up continuously. When he has his sneakers on, you can still see the motion of his toes. I don't think he has those little wiggles in the skin, here and there that you all speak of. Do any of you have motion similar to his toe motions? Thanks. Marjorie
 

Marjorie R. Wilcox

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something more

Something more I want to add. Rick's symptoms are beginning to go into his hands. He wakes up in the morning with stiff fingers, and one finger is permanently straight all the time. Also he is beginning to have perpetual motion with his hands..... sort of like twiddling his thumbs. He also scrapes his plate constantly while he eats, and taps the cards when we play card games. Do others with ALS do these things? M
 

BethU

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Hi, Marjorie ...

Don't know if this is the same kind of thing that Rick is doing, but recently (in the last month?) I find that I am rubbing or scratching or stroking my forearms and the palms of my hands constantly. I don't know if this is just obsessive compulsive behavior, or if it's an unconscious response to the atrophy ... as if my brain's trying to get through to stimulate the muscles any way it can.

(I read recently that some researchers are investigating ALS as a problem starting in the muscles, rather than with the neurons.)

Don't know if this helps at all.
 

Zaphoon

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From The Hall Of The Twitching King

(sorry, couldn't stay away, had to come out of the castle for this one...)

Blizna,

Just to echo Rose, Al, Beth and the others that have already posted, it matters only if the "twitch" is pathological or not in nature and that is determined by LMN death as picked up in the EMG.

I've had them all! Big twitches, little twitches, twitches that hurt a lot. Skinny twitches, fat twitches, even twitches that look like "chicken pox".:smile:

Deep twitches, shallow twitches, twitches that fall on rocks...

You get the point. To find out if your twitch is benign or pathological (unbenign?), have an EMG on the little fellow! Then, when you get your result, you can either relax, and breathe easier or start shouting, "Aw, shucks! Its the wrong kind of twitch!"

Only your neuro knows for sure!

Zaphoon

P.S. Beth, How'd I do? Am I a contender?
 
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trying to stay positive

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Hi Marjorie,

My husband's thumbs do the same thing you describe Rick's toes doing. I notice it the most at the dinner table. Seems like if he lays his thumb on the table that it will stop for a few seconds. I asked the neuro about it not long after he was DX in 8/07, and she said it was the nerves being irritated. His thumbs (mostly the right) have been doing this for a good year now.
 
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