Old 10-11-2007, 09:39 PM #1 (permalink)
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Default How "Localized" Is Localized Twitching as an ALS Sign?

I have read in a number of posts that twitching--fasciculation--is more likely to be a sign of ALS if it is "localized" rather than spread throughout the body. My question is this: how localized does it have to be to indicate possible ALS? For example--I have pretty much nonstop twitching in both my right and left calf muscles. Does having it in both right and left mean it is not localized in the ALS-likely sense? Or is the fact that it is confined to the calf muscles--albeit both right and left--still render the twitching "localized" in the sense meant by people who use that word as a possible indicator of ALS?

Thanks for any information anyone can provide about this issue.

Jeff
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Old 10-12-2007, 12:00 AM #2 (permalink)
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Mine started in one calf and went over to the other after a month or 2. Is it possible you didn't notice the first leg? Are you having any weakness?
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Old 10-12-2007, 12:59 AM #3 (permalink)
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I have twitching in several areas but always in the same spots. I have given up trying to define them or read them or even understand them, as they are too confusing to me. My new theory is that unless and until I have to give up another activity due to weakness, then I am not going to think about twitches. Cindy
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Old 10-12-2007, 01:49 AM #4 (permalink)
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CindyM: You are already DXd? I saw 3 neuros who told me spread twitching in the same areas is almost always benign. I have the same, with no weakness. How long your lasts?
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Old 10-12-2007, 09:11 AM #5 (permalink)
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Okay. I said I was going to stay away, but I can't resist.

No one but a good neurologist can tell you whether your twitching is benign (no matter where or how you twitch), and only then after running certain tests.

Certainly, bodywide twitching as a first symptom is generally suggestive, but not always, of a benign condition. But so is twitching in one or two spots without weakness or atrophy.

There are no rules that haven't been broken. Go see a good neuro.

A couple of things you might like to know: I've never heard of someone with benign twiching who didn't twitch in their calves. Calf twitching is extraordinarily common in the healthy population. Also, twitching in general is very common.

Just try to relax. Get an appointment with a good neuro. Odds are very very good that you are just fine.
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Old 10-12-2007, 12:02 PM #6 (permalink)
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Jeliota--
Your replies have a rather imperious, pompous, condescending tone, full of imperative commands: "Go see a good neuro (repeated twice, no less)." "Just try to relax." etc., etc.

Obviously only a neurologist can deliver a definitive diagnosis. No one out here is so dimwitted as not to realize that. In fact, only a good neuro or trained health-care professional can deliver any definitive judgments on this matter--which makes your own peremptory, pompous tone rather inappropriate considering that you have no professional training. Your self-educated pronouncements are based on zero clinical experience and formal training--something one would scarcely know from the tart tone you bring to your posts.

My post was really directed to people who have a personal history with the disease to see what their experience has been pending my seeing a neurologist.

In the meantime, I have a couple of tart commands for you, which I'm sured you will be glad to take since you are so good at dishing them out: Stop playing doctor out here when you have no professional training. If you want to give people advice, please do it in a compassionate tone, without your customary asperity and condescension. And please do make good on your promise to stay away.

People have called your attention to your problems with tone before, but you just don't get the message. I hope you will this time.
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Old 10-12-2007, 12:06 PM #7 (permalink)
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Al--

Thanks for your reply. I've noticed this twitching for about a week now. No weakness or cramping so far. I plan to see how this develops for another couple of weeks. If it persists or worsens--or leads to any other symptoms, I will go to a neurologist for the appropriate tests.

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Old 10-12-2007, 12:49 PM #8 (permalink)
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Jeliota--

You sound very authoritative in your judgments. Do you have any professional training?

By the way, I am perfectly relaxed, thank you. I just initiated this thread to elicit information and, perhaps, the experiences of people--PAL or otherwise--who have been through this twitching business pending my appointment with a neurologist, a process I have already initiated, since I'm well aware that only rigorous testing can tell what's going on. Given the fact that only rigorous testing and the analysis of a specialized neurologist can determine what's going on with any individual--and even the neuros aren't always sure, at least in the early stages--I think it's best that any and all laypeople out here be very careful about offering broad-brush assumptions or dismissals about what may or may not be going on with someone else.

By the way--what I like about Blizna's posts is that he offers useful information, but only as quoted from neurologists he has seen--he doesn't presume to play doctor based on his own layperson's knowledge. More important, his tone is friendly and compassionate, which I think is the right note to strike out here. If someone happens to be worried or concerned, tartly dismissing their worries or concerns--especially when such dismissals are based on no direct familiarity with their case or any professional training--is not likely to make them feel any better. The idea, I think, is to be reassuring, not dismissive, about people's concerns.


At any rate--here is some potentially useful information on this topic I found on-line from a neurologist at the Cleveland Clinic. I quote directly:

"Benign fasciulations tend to be rare [I think he means rare in frequency], spread out over the body and tend not to be progressived. In neuromuscular disease, fasciculations are more likely to be localized, more frequent and occur non-stop. That being said, localized fasciculation and/or progressively worsening fasciculations are not diagnostic of ALS (which is only made by EMG and the clinical picture of weakness and atrophy)."

Jeff
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Old 10-12-2007, 01:21 PM #9 (permalink)
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Jeliota--

There are some important distinctions about twitching that you fail to mention in your post. I quote the following from a neurologist from the Cleveland Clinic:

"Benign fasciculations tend to be rare, spread out over the body and tend not to be progressive. In neuromuscular disease, fasciculations are more likely to be localized, more frequent and occur non-stop. That being said, localized fasciculation and/or progressively worsening fasciculations are not diagnostic of ALS (which is only made by EMG and the clinical picture of weakness and atrophy.)"

Jeff
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Old 10-12-2007, 03:10 PM #10 (permalink)
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Al--
A couple of other questions occurred to me about your post, if you have a minute to respond:

1. Did your calf twitching precede any other symptoms--weakness, cramping, atrophy, etc.--and if so, by how long?

2. Was your calf twitching constant or intermittent--I mean, at the beginning--or since then--could you feel it or see it every minute, or would it sort of go away and come back at various intervals?

3. If not constant, was your calf twitching more noticeable while lying down or standing, or equally noticeable in all positions?

4. How long was it for you from initial onset of symptoms to diagnosis of ALS?

Thanks again,
Jeff
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Old 10-12-2007, 03:36 PM #11 (permalink)
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Question non stop twitching?

Hi,

Does non stop twitching mean 24 hours non stop or just that the same area twitches on & off forever? My calves do so on & off. Sometimes an individual small muscle I never felt b4 tap dances awhile & never does ( so far ) again. Other times a toe( never had that kind of control over iiit b4 ) or finger I never isolated, taps faster than I can 4 awhile & doesn't again 4 many months. So far calf muscles only repeaters. If this is totally diff. should I report it to my neuro?

Thanks 4 any info,
Kathy G.
Lexington, Ky.
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Old 10-12-2007, 04:11 PM #12 (permalink)
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Quote:
Originally Posted by shopathonic View Post
Jeliota--

There are some important distinctions about twitching that you fail to mention in your post. I quote the following from a neurologist from the Cleveland Clinic:

"Benign fasciculations tend to be rare, spread out over the body and tend not to be progressive. In neuromuscular disease, fasciculations are more likely to be localized, more frequent and occur non-stop. That being said, localized fasciculation and/or progressively worsening fasciculations are not diagnostic of ALS (which is only made by EMG and the clinical picture of weakness and atrophy.)"

Jeff

"The benign fasciculations tend to be rare" statement is false. Most people with BFS twitch most of the time. Perhaps there's a minute between twitches, perhaps a second; perhaps the twitching is constant. A couple thousand people over at aboutbfs.com will agree with me as will all the neurologists I've spoken to. The rest of the quote is accurate and matches my post. There are multiple responses by neurologists at the Cleveland Clinic site that contradict each other, so I wouldn't necessarily hold any one statement found there as the ultimate truth.

The important thing for you to know is that there are no "hard and fast" rules, so don't read anything anywhere on the internet and diagnose yourself with ALS. If you will do a moment's research, you will find that the same questions you have asked have been asked for years, and there are no answers short of going to the neurologist. Yes, as I have said on here many times, sudden onset of widespread twitching is not a normal initial presentation of ALS. But the fact that someone has twitching only in one spot is not indicative of ALS either. Twitching without the presence of weakness or atrophy is not indicative of anything.

If you only believe one thing I tell you, believe this: There are many things that can cause twitching besides BFS and ALS. Most of these things are treatable, and most of them are best treated early. If you wait to see if you start limping and then you go see the doctor, they may fix your problem, but you may not lose the limp.
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Old 10-12-2007, 04:31 PM #13 (permalink)
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Jeliota--
You speak very authoritatively, especially when you dispute the opinion of a neurologist at the Cleveland Clinic, one of the world's top medical establishments. Just curious--are you a physician or a trained or certified expert of any kind in this area? I think that people have a right to know the background of anyone who offers his own opinions and viewpoints so categorically without citing any other authorities or sources. I should also add that the quotation from the physician does not match your post, since he distinguishes between benign and non-benign twitching on the basis of frequency--the idea that ALS twitches are likely to be nonstop--and this is a point that you did not cover, which is one of the reasons I posted the quotation.

Allow me to politely address some unwarranted assumptions on your part. I have not "diagnosed myself" with ALS. I am simply seeking and sharing information. Plus, I am fully aware that I will need to see a neurologis (I'm certainly not going to trust the opinion of anyone on an Internet chat list!). I am simply tapping into other people's experiences while waiting to see one--especially since, as you point out, neurologists don't always agree.

You state your points with a considerable polemical zeal, as though you were in a debate of some kind. This is not a debate--it's simply a matter of people compassionately sharing concerns and information. We all know that the final judgment rests in the hands of trained medical specialists, but we nevertheless like to go to them with some degree of preparation and information of the kind that a forum like this can offer. What it can't offer is a diagnosis one way or another, even from the most authoritative and well-read source. You'll note that physicians on the Cleveland Clinic list and elsewhere make a point of foreswearing any intent to offer a medical evaluation in making their replies and comments. They also state their opinions in a calm, noncontentious, modest tone. I think that that we would all be well-served by emulating this circumspect mode of discourse out here, especially since none of us, to my knowledge, have any professional credentials in this field. We can offer information and suggestions, but preferably with the degree of warmth and modesty that is commensurate with our status as lay questioners and supporters.
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Old 10-12-2007, 04:39 PM #14 (permalink)
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Jeliota--
I didn't ascribe "ultimate truth" to the quotation from the Cleveland Clinic neurologist, any more than I would ascribe "ultimate truth" to the opinions expressed by a nonprofessional in an Internet chat room--so we agree on that. I simply posted it because it added some information that was not contained in your previous post concerning frequency of twitching in relation to this or that condition.

I have not diagnosed myself with ALS--nor should anyone else presume to rule it in or out except a highly trained neurologist--one who specializes in neuromuscular diseases and who has examined me. On that we can agree wholeheartedly as well.

Thanks,
Jeff
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Old 10-12-2007, 06:44 PM #15 (permalink)
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Bottom line is, if the docs can DX us after EMG's and NCV's and even spinal taps, then I suppose we surely won't be able to do it sight unseen. I'm going back to ignoring my twitches. And my weakness, also. And I am very nearly ready to quit going to doctors, that is unless and until something dramatic happens.
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