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?
Taking your questions in the order asked ..................
1 If a persom is worried or tense this can increase levels of adremalin (epinephrine ) in the blood
making muscles more sensitive to circulating neurotransmitters and more likely to fasiculate.
2 If twitches are very bothersome a number of drugs can be used to make them settle down these incluse Neurontin, Tegretol and Diamox, all of which are used in epilepsy because of membrane stabilizing effects.
3 I have not heard of the link with running shoes and it does not appear in the literature.
4You should feel good about the diagnosis at this stage, after two neurologists and an EMG the diagnosis sounds secure, the EMG is very snsitive to the other changes seen in ALS and lack of progression over time should reasure you fully.
5 I would agree with the previous information on different types of fasics, as ALS progresses fasic get more random and less likely to be associated with contraction.
6 I have no hard data on percentage of patients with fasics who end up with an ALS diagnosis,anwas unable to find such a study in the literature. In the Mayo series none of the patients developed ALS, since every case is unique your own normal EMG is more relevant than any statistic.
7 Regarding longevity the tendancy can be lifelong, the longest follow up in the Mayo series was 32 years, since the condition is benign people usually do not have any follow up after the initial diagnosis so this type of data is not available. We usually make the diagnosis , reassure the patient and advise him/ her to get on with life and not wory about it any more.
8 There is no documented link with Alcohol or aspartame, either excess, deficiency or withdrawal.
9 There is little news on breakthrough as very little research is being done on this benign condition specifically. One new development is the use of Neurontin to control fasics. Lots of research is being done in ALS of course but the reaearch if any with the AIDS cocktails has not been published.
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.