Going NUTS

Information about how to manage or reduce the severity of BFS symptoms

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Postby KERRI on June 17th, 2003, 4:32 pm

reneeintx wrote:I'm so sorry for upsetting anyone with my post. Acutally when I read about odd cases, I very scared myself and am looking for reassurance. :cry:

Renee :(


You are right, there are lots of medical conditions that are not normal, but people just live with them, and are okay. ex(high blood pressure, essential tremor, shingles..ect)


Don't apologize I think it was my fault, I nearly flipped when I read about the newsweek story, but it is okay we are going to flip once and a while, and I do not mind if anyone sends me a message when they are flipping go ahead, this is the only place where people understand.

Sorry guys I did not mean to make anyone flip, I think I am taking a break as well.

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Alright! That's enough!

Postby Davey on June 19th, 2003, 4:04 pm


Everyone! Here is my philosophy - take it or leave it:

"You should not fear death so much that you forget to live."

I also like a quote from the movie "The Shawshank Redemption":

"Either get busy livin', or get busy dyin'."

Only time will give us the answer. We are all going to die someday anyway.

If you want numbers, I'll give them to you:

Rate of ALS in the general population: 1 in 100,000 http://health.yahoo.com/health/encyclopedia/000688/0.html
Average age of onset: 55 +/- 15 years
Male-to-female ratio: males 20% more likely http://www.alsa.org/als/incidence.cfm
Percentage of cases of ALS where fasciculations developed first: 6.7% (Eisen and Stewart, 1994)
Percentage of cases of ALS where fasciculations developed first that had normal EMGs: 0% (Blexrud et al., 1994).

So, based on these numbers, we can extrapolate the following:

Rate of ALS with fasciculations first: 1 in 1.5 million.

Rate of ALS with fasciculations first with normal EMG: None

See the following journal articles:

Blexrud, M. D., A. J. Windebank, and J. R. Daube, Long-term follow-up of 121 patients with benign fasciculations, Annals of Neurology, 34, 622-625, 1993.

Not-so-benign fasciculation: Comment and Reply. Comment: Eisen, A. and H. Stewart. Reply: Blexrud, M. D., A. J. Windebank, and J. R. Daube, Annals of Neurology, 35 (3), 375-376, 1994.

So if you have ALS and present with only fasciculations, congratulations! You are one in 1.5 million.



Proud sufferer of Cramp-Fasciculation Syndrome since June 2001.

"Do not fear death tomorrow so much that you forget to live today."
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Postby Arron on June 19th, 2003, 4:18 pm

Dave, I'll take your sentence "So if you have ALS and present with only fasciculations, congratulations! You are one in 1.5 million." one step further... If you have ALS and present with only fasciculations AND have a clean EMG, you rare the FIRST person on earth to get it that way!

Great post by the way. Very precise, informative and to the point. I like that.

Also, keep in mind.. that 6.7% study where people allegedly presented with fasciculations only, had either dirty EMG's or none at all... so really, the 1 in 1.5 million ratio is actually even higher.

People, if you feel that "lucky", where you are the first person to get ALS with twitches only as a first symptom, and after you've had a clean EMG, then by all means, go buy lottery tickets in every state, because if you're lucky enough to be the FIRST person to contract ALS that way, your odds of winning the lottery (simultaniously) in each state is even at better yet! So relax!
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