THE WHOLE STORY REGARDING POLE'S POST!!!

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THE WHOLE STORY REGARDING POLE'S POST!!!

Postby jcavan4125 on September 12th, 2003, 12:37 pm

I am not trying to get on Pole's case for his post but I think it is important on this board to have the whole story before posting something that you know in advance will cause problems. I do realize that not everyone has access to every medical journal cited on the internet, but a better approach might be to ask on the board if someone can get the complete article for you before giving out partial information.
I read Pole's post and went to the hyperlink which is an abstract of a short article in the journal Neurology. So I went to my library and checked out the Whole article. What the abstract fails to mention is that this man (61 years old) had a markedly abnormal EMG from the first time he was tested (increased insertional activity, fibrillations, positive sharp waves and diminished interference pattern). This was in August 1983, but his weakness didn't begin until summer of 1984 (four years prior to onset of fasciculations).
The bottom line here is that this patient had an abnormal EMG from the first time it was tested and severely abnormal (with denervation) when he was retested at the onset of weakness.
If anything this should reinforce to everyone that an EMG will show abnormalities well in advance of weakness and should comfort those folks that had a normal EMG early in the course of their symptoms!
Once again Pole I'm not picking on you specifically, I'm just suggesting what might be a better approach for all of us in future posts.
Joe... "That which does not kill us makes us stronger"! - Nietzsche
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Postby alive on September 12th, 2003, 1:14 pm

I wish to repeat my case: Pole and Kerri (who btw has like 10 fascis a day!!) are really only interested in digigng up all the possible *beep* you can find on the internet - and there'slots to dig in!

BFS is NOT ALS and never will be! Ok - yes, it's a malfunction of the body, it's unpleasant, but it's not at all dangerous!

So don't be afraid in vain!

Yeah, your muscles jump all over the place...BUT IT'S NOT DANGEROUS!!!
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Postby Jenn311 on September 12th, 2003, 1:18 pm

Hey Joe,

(I feel a Hendrix tune coming on...he he he...) That was really super nice of you to go and look that up in a full-text database, and I think this scenario serves as an excellent example of the fear and anxiety that this kind of misinformation can lead to.

Personally, I didn't bother reading it, because the title was something like, "Only for the Brave", which I don't consider one of my attributes. So it was nice of him to forshadow the mood of the article, but Pole, keep in mind...not only brave, mentally-strong people are going to read it.

Just my dos centavos
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Postby rosa on September 12th, 2003, 1:26 pm

This is good - fool explanation. It does suck when you read articles stating "...By the fall, he noticed a nagging sore throat that wouldn't go away. His arms felt heavy and his muscles sore. On Oct. 8, 2001, a doctor at Johns Hopkins Hospital told him he had ALS and there was no cure... " "...Battling chronic fatigue, searing pain, loss of muscle control and a numbness in his hands that affected his grip, he still played in seven PGA TOUR events..." (http://www.golfweb.com/u/ce/multi/0,197 ... 79,00.html) Since we all are very sensitive to ALS related information, this drives me nuts and brings my scares back - sore throat, muscles sore, pain, numbness? These suppose to not be ALS symptoms? Ech, I think until l will not feel well enough, I will be worried more or less.
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How did I get attacked on that one

Postby KERRI on September 12th, 2003, 2:02 pm

Ya know what that is really nice, the first time in a long time that I do not say something totally stupid and I get the crap. What I was saying if you read my post is. THAT JUST BECAUSE YA HAVE BFS DOES NOT MEAN YOU WILL OR WILL NOT GET ALS. It has nothing to do with ALS.

I told Pole to chill out and not act like me.

Read the posts before ya attack me.

Pole is just scared, I know where he is coming from you guys you would not be here if you were not a little scared.

I admit I am a hypo and worry way to much about this stuff.

READ THE POSTS FULLY BEFORE JUMPING DOWN THROATS.

I am the one who pointed out that we did not have enough info.

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Postby jcavan4125 on September 12th, 2003, 2:51 pm

I agree with you Kerri, I thought you did a great job of responding to Pole in an intelligent manner. I sure wasn't trying to give you any grief (or Pole for that matter). Of course this board is for support of each other; we all have doubts at times. My point (to Pole not to you) was that our fears can often be addressed without spreading fear to everyone else. I happened to be lucky enough to have access to the information cited, but if I didn't I would probably have worried needlessly about it along with several others on the board.
Joe... "That which does not kill us makes us stronger"! - Nietzsche
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Thanks

Postby KERRI on September 12th, 2003, 3:04 pm

jcavan4125 wrote:I agree with you Kerri, I thought you did a great job of responding to Pole in an intelligent manner. I sure wasn't trying to give you any grief (or Pole for that matter). Of course this board is for support of each other; we all have doubts at times. My point (to Pole not to you) was that our fears can often be addressed without spreading fear to everyone else. I happened to be lucky enough to have access to the information cited, but if I didn't I would probably have worried needlessly about it along with several others on the board.



Thanks I am glad you posted the full story I new there had to be more to it than that. I think Pole needed you to do that though, he just needs someone to kick him in the behind every once and a while and so do I.

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Postby reneeintx on September 12th, 2003, 11:12 pm

Joe~

Thank you for digging up the real story :)

I have to admit I was a little disturbed reading it, which pole clearly labeled with a warning, but I am one that had to read it, being that it was like an enticement to me. It was like a thorn in my side all day thinking about it.

The thorn was removed by your post. A thousand thanks for clearing it up!!

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Postby Pole on September 15th, 2003, 2:48 am

jcavan, it's really nice that you've found all story. But to be clear - onset of fascis 1980, abnormal EMG 1983, weakness 1984?
Or I misunderstood something?

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Postby jcavan4125 on September 15th, 2003, 6:02 am

Hi Pole,
The patient was first seen by a neurologist in August 1983 and that is when the EMG was performed. He was admitted to a hospital in 1980 for nonspecific low back pain and it was noted by a physician that the patient had twitches in his muscles. It is not clear whether the physician actually saw the twitches or noted that the patient complained of twitches, but no workup was done at that time. He also had complaints of extensive cramping sometimes over a 100 episodes per day.
Clearly it is an unusal case, but by right, the patient shoud never have been diagnosed with benign fasciculation cramp syndrome. It, like BFS is a diagnosis of exclusion after everthing else has been ruled out. It doesn't say in the article exactly when the patient was given the diagnosis of BFCS but it does say that it was "assumed" that he had BFCS. Once an EMG was done which was clearly abnormal, it could no longer be said that he had BFCS.
I know that you are worried that he might have had a normal EMG if it was done in 1980, but that will never be known, because it wasn't done. All we know for sure is that his EMG was abnormal from the first time it was done. In other words, this patient never had a normal EMG! We can speculate all we want to on what it might have been if it was done in 1980, but we will never know.
I know it is hard, but you need to concentrate on the rule and not the exceptions. There is a sound body of evidence regarding ALS as well as BFS. Will there ever be exception found in either case, probably; nothing in life or in medicine is guaranteed. There is a saying that if you hear hoofbeats it is probably a horse; could it be a zebra, sure, but it isn't likely! If you have no weakness, no hyperreflexia, no atrophy and a normal EMG you do not have ALS! Take care.
Joe... "That which does not kill us makes us stronger"! - Nietzsche
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Postby Pole on September 15th, 2003, 6:12 am

Thanks Joe,

now this story is clear for me.

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