Twitching Muscle Series: Part 6 - Information that Will Reassure You You'll Be Just Fine

If you have muscle twitching, and no medical insurance, or a ridiculously high deductible, or are not convinced by a negative EMG test, then visit aboutbfs.com

Or check out search.medhelp.com

If you want to read all about other people's twitching experiences (benign fasciculation syndrome -- BFS), then aboutbfs.com is the place. It has an extensive forum. You'll be flabbergasted that so many, many people have the exact same twitching experiences, fears, anxieties and obsessions as you! In fact, some people are downright fanatical, counting every single twitch to calculate how many occur per day, in which part of the body, how the twitch feels, how long it lasts, etc. It's unbelievable how extensive this phenomenon is, and just how many people harbor an excruciating fear of ALS.

Many of these people have had BFS for a long time, which is reassuring to those who have just discovered it. It often starts with twitching in one area, then rapidly "spreads" body-wide. I do get occasional twitches in the upper body, but about 90 percent are in the legs.

It's intriguing to note that after I read many, many pages of the forum, my twitching has pretty much disappeared, because the forum has convinced me, once and for all, that all I have is BFS and nothing more. Then again, I also replenished my calcium supplements. There are just too many similarities on the forum, to my experiences. And ALS is a very rare disease, striking about 5,600 people in America per year.

The medhelp site is addicting, just plain addicting. You can't just go through one page. Neurologists address peoples' questions, and what these experts explain is very reassuring. Of course, based on the titles of the questions, it's apparent that some of the people sending in questions probably do have ALS.

Here is what I have learned:

1) ALS is a disease of muscle weakness, not twitching.

2) In almost all cases (doctors don't like to use the word "always" or "never") of ALS, the twitching comes AFTER the muscle weakness. Many people who send questions to the medhelp site actually ask how long it takes, in ALS, for the weakness to start kicking in, once the twitching starts. The neurologists can't answer this, because this is just not how ALS operates. Muscle weakness and sometimes with it wasting, comes FIRST.

3) ALS typically starts in one isolated body part. BFS often starts up in many places at once, though it can start in one body part, but it quickly "spreads."

4) In BFS, the twitching can often be stopped dead in its tracks (but not always) by moving around. So if your legs are getting hammered by twitching while you are seated, take note if this happens only when your legs are perfectly immobile. Rock your legs to and fro a little and see what happens.

5) The "perceived muscle weakness" in BFS seems to disappear the minute the person begins exercising. Twitching in the absence of muscle weakness is NOT consistent with ALS.

6) One neurologist said that, if after three months of twitching, there is still no muscle weakness, there's really little chance it could be ALS.

7) ALS is often characterized by the entire tongue twitching, and difficulty swallowing.

8) Tingling is not a symptom of ALS.

9) The hallmark symptom of ALS is muscle weakness characterized by dropping things, difficulty turning keys or typing, stumbling, tripping, a foot dragging, difficulty climbing stairs, exercise intolerance (though some people with BFS report exercise intolerance - this is fear-based). The weakness is not intermittent. Once it's there, it's there, and it gets worse.

10) In BFS, the twitching is aggravated by stress or fear, diminished by distraction towards an unrelated topic, and there is no true accompanying muscle weakness (only the "perceived" weakness).

11) In BFS, the EMG test comes out negative.

12) The tip of the tongue can twitch in BFS. In BFS, twitching can occur anywhere: toes, fingers, arches of feet, anywhere on the legs and upper body, by the lip, on the neck, even in the head.