Ruling Out ALS: Options?

[TheTrex]

I had a brief period when I actually felt like I was not dying, but I am affraid that I am going crazy again, I hear even Jenn post about reading of a man who had a thumb twitch and had ALS. Iread about a lady who had leg pain and muscle twitches, foot drop as well for a year before she went to the doctor and found she had als, there must be some way to rule out ALS, is it a muscle biospy or more EMGS whatever it is I would like to find it, I cannot stand this anymore.


Kerri

 

[JennFiction]

Hey Kerri...

Crud! I knew I shouldn't have posted that...but it seemed essential in representing how much influence our psyches have on our body. there is a way to rule out ALS, and it's an EMG, of which I have never had one. You, my friend, have had four. That pretty much rules out ALS. So you are fine, just repeat that and make it your mantra!
~Jen

 

[reneecatx]

Kerri~

I'm like you. I'm okay most of the time and then one article about some odd ball case of ALS and the freaky me starts emerging.

I go to another health board frequently and there is an ALS forum. I know people here are thinking.. why are you going there?!? It's like the forbidden fruit.. you are so tempted you have to taste.

There's a post about this guy's dad having symptoms of ALS and it took 2 years for him to be diagnosed In the post he says his dad has twitches in his legs and feet and cramps also. That's exactly what I've been having.

I had to pm Jenn and Alonzo, after reading that post and getting cramps that night.

I was crying and my husband was trying to console me saying there could be numerous factors that played into the story. Such as neuro's that don't see ALS very often, or the man didn't pass the initial neuro exam(strength, walking) and maybe his emg had something suspicious going on. I don't think we ever get the WHOLE story when we read these posts.

You know the more we worry the more we'll twitch. We can't zero in on these odd ball cases and throw everything else out the window.

Renee

Listen to Jen, she's dealt with this stuff for quite some time.

 

[BoyyDavoMan]

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
Average age of onset: 55 +/- 15 years
Male-to-female ratio: males 20% more likely
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.

 

[Alonzo]

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!