OK, originally I avoided reading this thread because I'm growing increasingly irritated with the internet search engines steering so many people to ALS and scaring them half silly. After being active on this forum for a few months, its gotten to where if the thread subject line says something about twitching could this be als, I don't even want to skim it. Not because of the person that posted the question, but because there is nothing I can do to change the way search engines function and it frustrates the heck out of me.
Like BethU had written in another thread line, just because someone coughs, (hopefully) their thoughts don't turn first to lung cancer.
After reading this thread (this one here) I wanted to add some to what has been said.
If you follow the link provided by Al's sticky on EMG (the very first sticky at the top of this, the "Do I Have ALS" forum) There is some very good solid information in there.
First, the opening page of the Q&A on interpreting EMG findings, this information is provided:
In a study in 1993, a total of 121 patients with benign fasciculations were followed up to 32 years, none developed ALS (Blexrud et al, in Ann Neurol 1993;34:622-625).
This (above quote) should be reassuring to Blizna and others.
But then, about how frequently one experiences fasciculations, that really varies from person to person. I am not diagnosed with MND. I have a diagnosis of bulbar palsy and probably MND. I started researching the fascis part of this type of disease when they started in my legs. My tongue has had them for several months, but for whatever reason, it just wasn't that much of interest to me. It mattered a whole lot more to me that I couldn't move food around well in my mouth anymore, and now have this dumb sounding lisp!
However, once my legs and feet started twitching I began to care more about understanding what a fasciculation is, and what they indicate. As my own fasciculations range from frequent ones in the same spot, to slow less frequent random ones in my legs, I found the following information. It is provided by the same "EMG sticky" link, on the second page of the EMG site:
Comment: So according to your clinical experience: the random twitchers, those who get them few times a day only and every time in totally different location (a twitch in the calf muscle once every hour or less, for example)- these are the twitchers who should worry more about als? * More than the twitchers who have them continuously in the same muscle?
Answer: Yes, this is true, it is good clinical assumption to follow, but it is not perfect, as surprisingly some patients with ALS are oblivious to their fasciculations.
The latter fits me much better, although I've had the very fast fascis (and my very own YouTube video of them is part of the EMG sticky thread) for the most part, mine are more random, less often. There seems to always be a little something going on, but much of it I don't notice.
Again, my diagnosis is only "probable" MND. I had no twitching or any sort of fasciculations until after I began to have weakness. The first twitching that I noticed ever in my legs did not start until early this August, so its only been about 6 weeks of them. I really feel for the people that have the more violent ones all over their body, all of the time, and have doctors telling them that they needn't worry. However, there are a lot of other annoying problems we can develop in our body that are not life threatening either.
The main gist of my post is to urge people to read all of the pages in the link provided by the EMG sticky. There is a wealth of information in there!
take care,
