3 years and thanks!

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3 years and thanks!

Postby Willsee on April 19th, 2014, 7:20 am

First, I want to sincerely thank all the people who take the time to post on this site. Like most everyone here, I went through a very scary time and can honestly say that I don't know what I would have done without your the comments and post. I hope the folks who post here regularly recognize that their efforts go a long way in helping a far greater number of people than they know. Please keep it up.

Second, I would like to quickly outline my story – which is like so many others here - in the hope that may help future readers.

Here is where I am:

I am 45, in good health, and have been twitching for about 3.5 years and seen a neurologist (ALS specialist at a teaching hospital) ever year since 2011.

I experience every kind of twitch: big rumbling twitches, faint lightning twitches, tongue, eye, and cheek twitches (that last for weeks on end), neck and shoulder twitches, torso twitches, hand twitches (so violent they make my fingers jump), arm twitches (so big they are visible through my suite), and (of course) feet and lag twitches - these happen constantly (seriously, they are happening right now).

I have had three EMGs (one every year), all indicated fasciculations (one showed chronic denervation).

I have no clinical weakness.

I have been repeatedly assured by an outstanding neurologist that I do not have ALS (Sometime I still worry that I do).

For years I looked for twitches all the time, tested my strength throughout the day (walking around on my toes and holding up books), studied my hands, feet, and legs for atrophy and even said tongue-twisters. In short, I behaved like a total tool.

Had I listened to my doctor three years ago when she said: “You don’t have ALS, get it out of your head,” I would have enjoyed my early 40s much more. I know I will twitch forever – my goal is to not care. To me the three keys to twitching are: sleep, moderate exercise and not worrying about twitching. Following this course of actin has not stooped the twitching but number three (when properly applied) solves the problem.

I hope this helps someone half as much as your posts have helped me. Your counsel really got me through some dark times. I am glad to answer any questions that anyone has. Until then, good luck and twitch on.
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Re: 3 years and thanks!

Postby TyWebb on April 20th, 2014, 3:30 pm

That is great news.

I just passed year 1. Still twitching, but don't notice it unless I focus on it. I quit working out when I took a new job 4 months ago. Shockingly, I have not lost weight or atrophied. I did start back last week and found that I was not that bad....no worse than any other time I took time off between working out. I did have a buddy say that he did not remember me ever hitting a golf ball as far as I currently can. Good news.

I still get the creepy crawlies and tremors. I snap and pop more than ever. I do get sore when I overexert. I cramp on occasion. It is what it is. My neurologist told me I do not need to come back to him unless I have something different going on. "Do not return complaining of twitching"

I don't visit much but figured I would update as well. Hope everyone is doing well.
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Re: 3 years and thanks!

Postby veryworried123 on April 23rd, 2014, 10:37 pm

Thanks for the posts
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Re: 3 years and thanks!



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