I know that many people describe fascics with ALS as looking like worms under the skin. Can you see these fascics all the time or do they stop when you change positions? Lastly, are the fascics really faint or is it easy for anyone to notice them?
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GlenBrittle
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In my experience , they come in all sizes. I have little ones that I cant see or feel , but are seen by others. I have large ones that are visible through my clothing.
I would not describe it as little worms ... more like a quick skin jump , a twitch.
Glen
I would not describe it as little worms ... more like a quick skin jump , a twitch.
Glen
Al
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If you have ALS they are mostly constant. Mine looked like a bag of worms under the skin in my calves and arms. Big muscles in legs just looked kind of like a thump and could be seen through clothes.
AL.
AL.
rose
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I don't think it matters what type of fascics a person has, its not the type of twitch, but the cause that is of concern.
If the cause is not pathological, but benign, that is the only thing that is important as far as a person's health and prognosis.
There is nothing out there in the medical community that tells us that by how a person describes a twitch that they experience, or by how a doctor or medical caregiver observes a twitch to be, can say if it is a benign fasciculation, or twitching from other causes.
That is why the other information doctors gather is so important, they look for abnormal reflexes, they look for weakness, they look at speed of nerve conduction, etc.
p.s.
I just wanted to add, that I do not remember a single doctor, whether they were a neurologist or any other specialty, asking me if I had twitching. I was asked about weakness, dexterity, that sort of thing.
If the cause is not pathological, but benign, that is the only thing that is important as far as a person's health and prognosis.
There is nothing out there in the medical community that tells us that by how a person describes a twitch that they experience, or by how a doctor or medical caregiver observes a twitch to be, can say if it is a benign fasciculation, or twitching from other causes.
That is why the other information doctors gather is so important, they look for abnormal reflexes, they look for weakness, they look at speed of nerve conduction, etc.
p.s.
I just wanted to add, that I do not remember a single doctor, whether they were a neurologist or any other specialty, asking me if I had twitching. I was asked about weakness, dexterity, that sort of thing.
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chris_uk
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my speed of nerve conduction was slow in my bad leg! even thought it is supposed to be a good sign, that study suggest that it could be actually a bad sing regarding ALS.
planningguy
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Chris,
What study are you referring to, or are you just making a general comment on Rose's post?
Robert
What study are you referring to, or are you just making a general comment on Rose's post?
Robert
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FOR THE LAST TIME CHRIS
That study did not have any definitive conclusion at all, so stop saying things that are completely baseless. I know you didn't read the study . . . you just read the abstract and are not in any position to say a thing about it. I did read the study . . . the entire study . . . and again, no conclusions were made. On top of that, those ALS patients that did have slowed conduction velocity also had signs of active denervation (PSW's and fibs) along with reinnervation and fulfilled El Eschorial criteria. YOU . . . HAVE . . . NONE OF THAT! When the hell are you going to accept the fact that you have absolutely NO EVIDENCE of ALS? This is getting absolutely ridiculous. Get some help and move on with your life.
Kristin
You have been given the all clear by two neuro's and have had clean EMG's and yet you persist with this nonsense. I guess your internet searches are much more reliable than two reputable neuro's actually examining you and telling you that you are fine. My advice to you is the same I gave to Chris: get some help and move on with your life.
That study did not have any definitive conclusion at all, so stop saying things that are completely baseless. I know you didn't read the study . . . you just read the abstract and are not in any position to say a thing about it. I did read the study . . . the entire study . . . and again, no conclusions were made. On top of that, those ALS patients that did have slowed conduction velocity also had signs of active denervation (PSW's and fibs) along with reinnervation and fulfilled El Eschorial criteria. YOU . . . HAVE . . . NONE OF THAT! When the hell are you going to accept the fact that you have absolutely NO EVIDENCE of ALS? This is getting absolutely ridiculous. Get some help and move on with your life.
Kristin
You have been given the all clear by two neuro's and have had clean EMG's and yet you persist with this nonsense. I guess your internet searches are much more reliable than two reputable neuro's actually examining you and telling you that you are fine. My advice to you is the same I gave to Chris: get some help and move on with your life.
rose
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Robert (and Chris) I was puzzled by Chris's comment too, as I did not see any study sited in this thread.
Someone had brought up a study having to do with peripheral nerves and sensory conduction while back, and I remember Wright taking the time to explain that the comment made was taken completely out of context.
Just speaking from my standpoint, I'll reiterate that no doctor has ever asked me if I was experiencing fasciculations or twitching. It is not part of the diagnostic process in eliminating or concluding that a person has ALS, and the El Escorial states that conduction block (I guess this is a slowed NCV?) is criteria that points away from an ALS diagnosis, and toward other causes.
I recently was researching the Jpeg that my gastro doctor has said that although it is not time yet, I will need (trying to differentiate between jpeg and the PEG that most on PALS on here have) and I ran across a report on a 42 yr old man that had severe balance issues, marked muscle atrophy, and something else.... just can't remember. but anyway, because of the slowed NCV the doctors were able to realize they were looking at someone that had problems from severe neuopathy brought on by so many incidences of being dehydrated. According to this study, the man developed terminal renal failure from the dehydration. But, of course, what I found was so interesting, was, not only was he never considered a "candidate" for ALS, but that the cause of his neurological problems were something as simple as not being able to stay hydrated adequately. I believe he had the jpeg because of complications from diabetes. Advanced diabetes often causes various levels of gastroparesis, and as I have gastroparesis, I've become resigned to most information I can obtain on it being written for diabetics.
Once again, this is another great example why we need our doctors to sort things out, rather than Dr Google......
Another observation is that we are not islands unto ourselves (not original, but true nevertheless) For those that remain fixated on ALS, even though they've been told by their doctors, etc, that this is not the case, it might be good to remember that those that love them are eventually going to tire of the whole obsession. Its hard enough making things work when everyone is happy, healthy, & employed, etc... if the focus remains on the unlikely, eventually relationships are bound to suffer. Even for those of us that have a diagnosis, having that diagnosis does not mean that every conversation, and all down time needs to be spent on ALS and its ramifications, life goes on, others in our circle of friends and families have things going on that they need to know matter as well.
I, for one, intend to get more out of my daily living than dwelling on what is wrong with me, and what is or might be in store for me in the future.
Every day is a gift.
Someone had brought up a study having to do with peripheral nerves and sensory conduction while back, and I remember Wright taking the time to explain that the comment made was taken completely out of context.
Just speaking from my standpoint, I'll reiterate that no doctor has ever asked me if I was experiencing fasciculations or twitching. It is not part of the diagnostic process in eliminating or concluding that a person has ALS, and the El Escorial states that conduction block (I guess this is a slowed NCV?) is criteria that points away from an ALS diagnosis, and toward other causes.
I recently was researching the Jpeg that my gastro doctor has said that although it is not time yet, I will need (trying to differentiate between jpeg and the PEG that most on PALS on here have) and I ran across a report on a 42 yr old man that had severe balance issues, marked muscle atrophy, and something else.... just can't remember. but anyway, because of the slowed NCV the doctors were able to realize they were looking at someone that had problems from severe neuopathy brought on by so many incidences of being dehydrated. According to this study, the man developed terminal renal failure from the dehydration. But, of course, what I found was so interesting, was, not only was he never considered a "candidate" for ALS, but that the cause of his neurological problems were something as simple as not being able to stay hydrated adequately. I believe he had the jpeg because of complications from diabetes. Advanced diabetes often causes various levels of gastroparesis, and as I have gastroparesis, I've become resigned to most information I can obtain on it being written for diabetics.
Once again, this is another great example why we need our doctors to sort things out, rather than Dr Google......
Another observation is that we are not islands unto ourselves (not original, but true nevertheless) For those that remain fixated on ALS, even though they've been told by their doctors, etc, that this is not the case, it might be good to remember that those that love them are eventually going to tire of the whole obsession. Its hard enough making things work when everyone is happy, healthy, & employed, etc... if the focus remains on the unlikely, eventually relationships are bound to suffer. Even for those of us that have a diagnosis, having that diagnosis does not mean that every conversation, and all down time needs to be spent on ALS and its ramifications, life goes on, others in our circle of friends and families have things going on that they need to know matter as well.
I, for one, intend to get more out of my daily living than dwelling on what is wrong with me, and what is or might be in store for me in the future.
Every day is a gift.
planningguy
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Even though it's masochistic, I'm glad Wright goes through the effort to repeat himself. I think I even remember commenting in that thread after Wright posted. Sigh... at least I've never forgotten the kids anywhere 
Robert
Robert
planningguy
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Zaphoon,
I'm trying to decide whether or not you where making a clever allusion to being past your twitches, or being redundant about your butt twitching. I suppose it depends on one's mood and state of mind :-D.
Robert
I'm trying to decide whether or not you where making a clever allusion to being past your twitches, or being redundant about your butt twitching. I suppose it depends on one's mood and state of mind :-D.
Robert
Zaphoon
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Robert,
I get bored with the whole "twitching" thing and thought I would comment on butt twitches that I can feel but can't see (only because they are behind my field of vision).
How many people are willing to admit their butt twitches, anyhow?
I noticed my right cheek (facial cheek, not butt cheek here) is becoming exercise intolerant and may be going the same way my right eyebrow is (droopy). It twitches (I'm beginning to loathe that word) after I smile and when I play my horn, I'm in constant smile mode.
You can't play a horn when your cheek is twitching. Guess its time for more cowbell in the band!
I get bored with the whole "twitching" thing and thought I would comment on butt twitches that I can feel but can't see (only because they are behind my field of vision).
How many people are willing to admit their butt twitches, anyhow?
I noticed my right cheek (facial cheek, not butt cheek here) is becoming exercise intolerant and may be going the same way my right eyebrow is (droopy). It twitches (I'm beginning to loathe that word) after I smile and when I play my horn, I'm in constant smile mode.
You can't play a horn when your cheek is twitching. Guess its time for more cowbell in the band!
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