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fasiculations and onset location

PostPosted: November 25th, 2002, 9:14 am
by Guest
quick question...
if you have limb onset can fasics be everywhere else? and if you have bulbar onset can fasics be anywhere other than the bulbar region? It would seem to me that they should only be in the location of the onset if progression has not become apparent. I am curious though. Please answer and tell how certain you are about your answer. Thank you so much.

PostPosted: November 25th, 2002, 11:21 am
by Asterix
Hi Guest,

I assume with "limb onset" you're referring to ALS ?
There is no absolute in ALS and onset patterns seem to vary greatly.

So if you read the PALS stories on the web (which I do not recommend as long as you only have BFS and a high anxiety level) you will find that both
localized as well as widespread twitching has been reported
in any combination with both localized and more widespread onset of weakness (with localized twitching/weakness initially more common though)

I'd like to point out, however, that the most important diagnostic criteria
with regard to ALS/BFS is not fasciculation but the absence or presence of weakness and/or the EMG findings.

The presence and distribution/frequency of fasciculations alone
is not considered as diagnostically relevant by most neurologists.
Even when picked up on EMG, fascics alone are not considered as
a diagnostic criterion of ALS, independantly from their distribution/frequency or intensity.

So if the only symptom you have is fasciculation (whether localized or widespread) which I conclude from your statement "progression has not become apparent" I would not worry about ALS onset patterns, you most probably have only BFS which comes with any variant of twitching

PostPosted: November 25th, 2002, 8:52 pm
by Arron
Guest, what Asterix said is pretty much true. I have to differ on one thing though, from what I have learned about ALS, is that ALS twitches are much more likely to happen in the affected areas first and are not going to "pop" or "thump" in other places and then be gone. As with anything, there are always variences and indifferences in symptoms and what you read when someone with ALS gives their symptoms might not alwasy be "clinically" correct. I mean, are you afraid of getting the Flu? You know that thousands of people a year die from the Flu? Yet we blow it off as nothing more than a bad cold sometimes and in reality, it is actually a pretty serious illness with a wide variety of symptoms. Well, ALS has symptoms as well but some of the symptoms are a secondary reaction to the undrlying cause, such as twitches being secondary to dying tissue. There is no way benign twitches are associated with ALS and there is no way that ALS twitches are associated with BFS. Just because a person with ALS says they had twitches in numerous locations with no "felt" weakness doesn't mean it's true. Patients aren't doctors and they don;t have expensive equipment to do self diagnosis, so what is perceived and what is in reality can easily be two entirely different things.

BFS also has a wide variety of symptoms, ALS does not have that wide of a range of symptoms, when you look at the hard facts. There is ALWAYS weakness and atrophy with ALS. If you are having twitches with NO weakness, and we mean REAL "clinical" weakness, and you have a clean EMG, then the chances of having ALS are so slim, it's amazing. Just remember, twitches from ALS are CAUSED by dead or dying muscle tissue, therefore, weakness IS present once ALS twitches have been detected. The patient might not notice it right away, but ALS tends to move pretty fast and it wouldn't be very long before serious signs became apparent and a clinical exam and an EMG would sure be the deciding factor. Just remember, twitches do NOT "cause" ALS.

PostPosted: November 26th, 2002, 6:07 am
by Asterix
Arron is right: the kind of random, widespread twitching (with no weakness) is most often associated with benign fasciculations, whereas in ALS the localized onset is more common and always associated with weakness and/or EMG findings.

And, by the way, I really second Arron's caveat about the credibility/accuracy of patients stories on the web.
That's why I don't recommend reading them (unless you are really
a PAL) Unfortunately for me, I havn't been able to follow my own advice
and read way too much of those stories (please do not make the same mistake :(

PostPosted: November 26th, 2002, 12:04 pm
by Arron
Asterix hit the nail on the head... stay AWAY from ALS web sites and postings from PALS because what they "believe" they first had as symptoms and what is clinically "reality" for what they had first can easily be two different things. I mean, when you get the flu and you start sneezing, coughing and aching are those your first symptoms? No way! Maybe that's what you thought were your first symptom and you might post your beliefs on a web site that you you had those first but the reality is, the flu is a virus and it spreads throughout your body for several days before you notice anything at all. The first actual symptom is usually fever. Antibodies and a raised white blood cell count will show-up in blood tests. The other symptoms don't show-up until later. The underlying cause certainly isn't the symptoms, just like in with ALS twitches, the may be the first thing noticed, but there is certainly more sinister things going-on in the mean time, CAUSING the twitches, not the other way around. You can't take what a person says was their only symptom without actually having all of the facts first. The best thing to do is heed Asterix's and my warning and stay away from ALS message boards or you will scare the pants off of yourself for no reason at all.