Subject: Re: A Few More Questions Answered, Please
Forum: The Neurology and Neurosurgery Forum
Topic Area: AMYOTROPHIC LATERAL SCLEROSIS - ALS
Posted by CCF neuro MD MM on October 19, 1998 at 09:52:12:
In Reply to: A Few More Questions Answered, Please posted by Mick on October 19, 1998 at 01:44:10:

As you know better than I, it seems that a ton of people write in with ALS concerns,
often stemming from fasiculations. For those of us that are twitching, some with
cramps, some without, could you provide a bit of comfort/perspective.

1)What is the role of anxiety/worry on fasiculations themselves? I've read many places
that thinking/worrying about ALS vis-a-vis the fasiculations can actually make the
problem worse, thereby increasing the worry, etc. etc.

2)What (if anything) can a person with twitches do? If they are benign, where did they
come from? I've read that they can often be associated with post-viral reactions. If
there is truth to this, can antibiotics or other medication help?

3)I've asked this before, but I'll ask again in this posting: Have you ever heard of new
running shoes creating twitches in the legs? In my case, I bought new shoes about two weeks
before these things began. The twitches are quite strong in my lower legs (calves, achilles
areas), and sometimes the muscles feel a bit strained (though no cramps, per se). If the
shoes (good as they are) were the wrong choice for my running style, could this be causal?
It wouldn't surprise me if the leg fasiculations in my case were caused by something pertaining
to the shoes, and the balance that I get from time to time are a function of my concern.

4)I've been to two neurologists, both of whom have given me clinical exams, including an EMG, and
said they are quite confident there's nothing to be worried about (ex benign fasics w or w/o cramps).
If two independent doctors make this call, as well as my GP, should I feel pretty good about the
non-ALS diagnosis? In a previous posting, one of your fine colleagues said that when fasiculations
are present, a good exam ALMOST ALWAYS (his/her caps, not mine) will yield weakness, atrophy, etc. if
it is ALS related.

5)I also read in a previous posting that there are different types of fasics, basically identified
depending on whether they occur randomly, or only on contraction of muscle. As I read it, it suggested
that ALS fasics fall into the contraction category, and that the random, when the muscle is at rest type
of fasic is more indicative of a benign (or at least non-ALS) condition. Comments?

6)I know that it is difficult to do so, but can somebody throw out a rough approximation of what percent
of patients that you have seen that have fasics/tightness in muscles end up with ALS diagnosed? I would
think that many of us who have just twitching or tightness would be reassured if you came back with some
perspective on the probabilities (recognizing all cases are unique).

7)Can someone address the question of longevity for fasics. When a benign condition, what is the mean time
frame that folks endure them? I know the variability is huge, but on average do you see patients for weeks,
months, or years with these things? I am aware of the Mayo study, but couldn't get enough specificity out
of it to help me with this question.

8)Effects of long term alcohol or aspartame use in the development of fasics, and whether abstinance would
help. I know neither are great dietary adds in and of themselves, but have you heard of them contributing
to twitching. I actually stopped my vast Diet Coke consumption about a month before the fasics, and wonder
if the lack of the stuff could yield "withdrawal" symptoms, albeit quite a bit later.

9)What is the latest and greatest news on treatment/cure breakthroughs? I realize that there is a lot of
research going on, but was curious if there is a buzz about any new activity. If there is some speculation
that ALS is immunodeficiency linked, has there been testing of the new AIDS "cocktails"?

As always, thanks for the time and great answers.

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