6.7% article

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6.7% article

Postby speg on May 28th, 2004, 1:46 pm

I've been surfing through alot of the posts here and I came across one I found to be severely disturbing. It was a study done that said 6.7% of ALS patients actually presented with fasics . . . and they felt anyone over 45 with fasics (no weakness) should be concerned! Being 42, this scared the hell out of me, especially since my left calf (only) has been twitching the past 48 hours.

I was just wondering anyone's thoughts on this. I was just starting to calm down after realizing most ALS patients present with weakness, fasics come later, aren't usually felt, etc. And why is it whenever they publish a story in a magazine they always say, "It began with a twitch?"

Has anyone ever done the math? I wonder what my odds are being a woman under 45 to present with fasics only?

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Postby Brian_B on May 29th, 2004, 2:22 am

that study is wrong if it says anyone over 45 with only twitches and no weakness is reason to be concerned

a quote from Adams and Victor's Principles of Neurology, which is the best neurology journal there is

"A simple clinical rule is that fasciculations in relaxed muscle are never indicative of motor system disease unless there is an associated weakness, atrophy or reflex change:
"The only thing necessary for evil to triumph is for good men to do nothing"
Edmund Burke
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Postby Bradford on May 30th, 2004, 8:18 pm

There a couple of members posting about this article/report including myself about the actual conclusions.

If you have read the report (I haven't), does it make the final conclusion that 6.7% of "ALL" ALS patients present with fasics prior to weakness?
Or does the report conclude that 6.7% of the "patients observed" in this specific study presented with fasics prior to weakness?

Like I said I haven't read the article so I'm asking those who have to make sure before posting about a significant conclusion such as this that the information is taken in context and that the article is fully understood.
Sometimes the "edit" is written poorly and can be vague but when rereading it in context you may find different conclusions.

If anybody has access to the article and would kindly take the time to disect it and then report back to us, it would be a great service to all to find out if there is credibility to it. It seems that this information is in direct conflict with the way our neurologists approach the symptoms of twtiching and what they know about the physiology of our neruomuscular system that is gleamed from EMG.
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6.7% study

Postby twitchingthenightaway on May 30th, 2004, 9:02 pm

I've read the study. The Authors also responded to the original Mayo study btw. As I recall, it was a Canadian ALS clinic that surveyed their records of two or three hundred ALS patients and found that that percentage presented with twitching as their first symptom. I can't remember clearly, but I think perhaps that did not mean it was their only symptom upon examination (i.e., it's the first thing the patient noticed but the doc noticed more things wrong).

As I recall, in their response to the Mayo article, they agreed that it was also their experience that by the time PALS were twitching, EMG signs would show. I think someone on the other board even contacted the authors of the Canadian study about that, who reported that all of those 6.7% did have abnormal findings on their first EMGs.

And yes there was also another study, very similar, that found only (I think) 2.9% of PALS reporting or presenting with fasciculations as their first symptom.

Moral of the story: irrelevant in light of a clean EMG. So get tested if you're in doubt! It will make you feel better for a length of time directly inverse to the severity of your hypochondria.
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6.7% article

Postby Bradford on May 31st, 2004, 2:59 pm

Twitchingthenightaway,

Thank you for your reply. I wouldn't take the arrogant approach of classifying many members concerns as hypochondria. Theres a big difference between being anxious about ones symptoms because of a lack of understanding and being a hypochondriac in the real clinical sense of the disfunction. Therefore, we'll take your commentary as it was meant to be...a cute little statment.

I didn't have a physical exam and EMG/NCS done to offset my hypochondriactic tendencies I had it done for diagnostic purposes for concerns about my health and future. That was at my physicians request and orders and not necessarily my own call.

We do appreciate your recollection about the article. I think in a indirect way you've anwered some of my questions about the article by mentioning that it was 6.7% of 200-300 PALS in contrast to 6.7% of ALL PALS worldwide.

Based on your judgement about the artilces sited, I get the impression that the study didn't attempt to go down a road to prove that a certain percentage of people with twtiching symptoms will go on to a motor neuron disease because the study was done in retrospect to patients who had already been diagnosed or had indications in the physical exam and electrodiagnostic studies.

FOR CONCERNED MEMBERS: The article DOES NOT conclude that 6.7% percent of ALL individuals with twtiching symptoms will end up with the ALS disease. It only concludes that of 200-300 patients (already with ALS), 13-20 of these patients first went to their doctor because of twitching symptoms. And upon examination, the authors conclude there were probably other tale-tale signs.

Shakestheclown said it best...ALS presents like a skunk at a picnic. Hoepfully, this will discussion will lessen the concern that weakness may come several months down the road inspite of a good physical exam, clean EMG/NCS and persistant twitching symptoms.

Thanks to Twtichingthenightaway for some needed clarification!
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Postby dwl on May 31st, 2004, 3:40 pm

I posted on this 18 months ago!

http://nextination.com/aboutbfs/forums/ ... =eyeballed

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I Knew it-my instincts were right!

Postby Bradford on May 31st, 2004, 5:36 pm

dwl.

I knew if you were monitoring you'd jump in. Thanks for pointing to the source.

I was glad to see that you said the same thing 18 months ago that no conclusion can be drawn that 6.7% of twtichers will go on to ALS.

Equally reassuring to the EMG results is the fact that both correspondences say it is rare that a patient will present with fasics prior to weakness and incoordination. The context seems to assume that
the underlying physiology is such that fasics in ALS will present with weakness and other neurological changes.

So, the cliche still holds that fasics are known by the company they keep and that 6.7% of twtiching leads to ALS really belongs at about "BS".com

Thanks David!
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Postby twitchingthenightaway on June 1st, 2004, 9:55 am

Bradford,

I don't think it's resonable to recast what I wrote as a blanket accusation that everyone here is a hypochondriac... It's obviously no such thing. However it's not "cute," as hypochondria is obviously a problem often going hand in hand with the twitching, and I am pretty sure they are related and feed off each other. I meant what I wrote, the more someone is worried about this twitching, the shorter length of time an EMG will be reassuring. I'm six years into it, I know from experience.

Otherwise--the 6.7 study does NOT mean that percentage of people who twitch will turn out to have ALS. There are many more people who get widespread twitching than who get ALS (I know a couple myself).

Again, as I recall, the authors of this study wrote a quasi-rebuttal to the Mayo study when it was published. They agreed with the Mayo study and also reported similar findings, that once a clean EMG and clean clinical were passed, ALS did not follow. However they wrote that anyone over I think 45 who presents with twitching should have an EMG to rule out ALS.

The 6.7% number is nothing to be concerned about. I do think it's higher than reality, judging by the second-hand accounts of so many neuros who've said they never or almost never see twitching first before ALS, plus the other study showing only something like 2.9% of PALS twitching first, but obviously it does happen on rare occasions to a rare disease. That's just reality. However it's not that big a deal.

If I had it all to do over again, I'd get it checked with a clinical, EMG, then force myself to forget about it. Too late now, the worry is too firmly rooted in my psyche.
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No harm no foul

Postby Bradford on June 2nd, 2004, 1:35 am

Twitchingthenightaway,

Didn't mean to be so arogant myself and I apologize about the statement of being cute. There was a lot of truth in what you said! I did truly appreciate your post about the observations and correspondance and it was helpful since I have only heard about it.

I knew somebody somewhere got their conclusions crossed and something like that needs to be nipped in the butt especially on this forum where anxiety is the master of many people and sometimes gets the best of me too.

Cool username but ShakestheClown still gets me laughing!

Best of health to you!
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Don't let these article consume you!

Postby SusanSid on June 2nd, 2004, 10:20 am

In some ways articles such as these only end up scaring people. I'm not an expert on medical statistics, but I'm sure that many are interpreting this article as they are the alleged 6.7% of future ALS patients. Medicine, especially in this area (BFS) isn't very well researched, so we need to be careful and not assume the worst. Not only that, but I've been on this website for over 2 years, have had fasciculations for 2 1/2 years and am over 45 (oh, lucky me) and I have yet to see a case of ALS on this board. Yes, a few are convinced that they have it, but don't. Also, don't forget that the disease doesn't just lurk around for years and hit you. It's something that causes intense neuromusclar changes at a rapid rate.

I think we all are worriers to a certain degree, and rightfully so when we have such an under studied condition. I know that stress and worry doesn't help any condition, even a common cold. I have let this BFS stuff scare the heck out of me on and off for several years, and I'm still here, and obviously don't have ALS. I wish I had spent the time enjoying life instead of planning my funeral!

Don't let the fear consume you, it's not worth it!

FEAR: False Evidence Appearing Real

Sue :wink:
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Postby jcavan4125 on June 4th, 2004, 4:40 pm

Nice pneumonic Sue!
Joe... "That which does not kill us makes us stronger"! - Nietzsche
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