freaked out again!!!

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freaked out again!!!

Postby Saundra Hearn on May 28th, 2004, 1:50 pm

I have been a twitcher for 2 months, I found this site and was doing much better, then today i read a post here that 6.7% ALS patients have twithcing for several months before weakness, so here I go again I feel like I'm back to square one :cry: I have had blood work done by my Dr. and everything is fine, so I go see the nuro next month. In the mean time I'm back to worrying! :? my symptoms are both legs, some in my thumbs, and upper arm, and a couple of times my eyes.
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Postby kent1915 on May 28th, 2004, 2:26 pm

I am not so sure I buy the integrity of the article that is being cited; do we even know the source??? I do think it interesting that the stat of 6.7% present with fascics is getting such a powerful reaction from people which again I think points to the lack of understanding in the media of this.

With that said, when I have talked to the docs about my fear of ALS, my fascics, etc. ALL have told me that by the time the fascics are there, the weakness is quite evident. Again, if you think about the mechanics of ALS and limb dysfunction, etc. it would make sense that weakness first and then fascics (even with bulbar onset!). The fascics associated with ALS also tend to be very fine twitches that the person seldom even notices. Remember as well, ALS tends to be an insideous progressing illness and if you had fascics first, there would be weakness/dysfunction soon after. Look at the many sources that confirm this versus the one article that is not even cited for reassurance.

Besides that, diffuse twitching is a sign of BFS. ALS will target nerves and muscles along a particular path, the limb is dead and the next target appears. I don't know of any all regions at once with no weakness.

My $0.02.

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Postby speg on May 28th, 2004, 3:08 pm

I hope it wasn't my post that freaked you out!

There are a couple posts pointing to this study if you do a search. I wish I could recall the title of the original post. I did come across another post about a Canadian study that said only 3% present with fasics. Much better!

Saundra, it freaked me out too and I apologize for scaring you. I keep telling myself that the odds to even have ALS are slim, the odds are even slimmer if you are a woman, and then what's left -- that 3-6%? Slim odds indeed!

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twitching then weakness

Postby Bradford on May 29th, 2004, 3:55 am

Good posts and replies everyone. I haven't read the studies so I have
to rely on those who have. I have a couple of questions:

1) Do these studies conclude that the "percentage" represents ALL
diagnosed cases worldwide or just their patients that they observed?

2) Was the study out to prove that fasics can eventually lead to weakness
therefore set up a control group to observe or did they obtain history
from a large sampling of patients?

For example, if they only observed 100 patients with fasics and 6 developed weakness then that is "6% of 100 patients observed" and does not represent the demographic of ALL diagnosed cases of ALS.

It could be that a small control group did follow a statistical trend, but on the flip-side if more patients records were factored into the study (e.g. ALL ALS patients worldwide) the percentage would plumit downward as I would think that more patients present with weakness followed by fasics.

Secondly, since there seems to be a second study concluding a figure of 3% then there seems to be a large margin of error assuming that the research is making the leap to say that these percentages represents all ALS patients.

And finally, I would want to know if the report was inclusive of EMG monitoring on these patients to qualify the fact that signs of denervation were NOT found and the only presenting symptoms were fasics.

Again, I have not read the report or study and I am curious. My intincts tell me that the motivation of these studies might have been centered on
the denervation and reinervation process that happens when "surving" neurons branch out to muscle fibers that have lost their nerve connection.

The studies MAY have set out to conclude that the affected muscle fibers having been reinervated did not result in measureable weakness and weakness came later when the reinervation process was exhausted. However, EMG findings might have clearly indicated that these patients
did have problems early on which clearly reinforces the fact that a
good physical exam and EMG/NCS can be reassuring to us that ALS is NOT in the picture.

Anyone want to clue me in what this is really about?
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Postby Jenn311 on May 29th, 2004, 8:28 am

Hey Brad,

Are you an attorney?

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Postby Bradford on May 29th, 2004, 4:09 pm

Hi Jenn,

Not a lawyer.

I'm concerned that the 6.7% thang maybe blown out of proportion by a misunderstanding of the concluded results. Regardless if the percentages are correct, the fact may remain that paitents DID present with fasics
and because I'm a charter member of the Fellowship of Twtichers, I have concerns like everyone else about this.

I suspect that detail got lost in the interreptation of the facts as one member told another and told another and so on. Before you know it,
6.7% of all ALS patients present with fasics before weakness when the study wasn't saying that at all.

Again, I didn't read the reports so I'm calling out for help about this.

How about you, are you arguing cases?
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