So what is the truth?

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So what is the truth?

Postby Pole on June 13th, 2003, 8:43 am

I found the post on this group (in "support group" I think) where somebody was told by a neurologist that there was a possibility to twich without weakness and atrophy and have ALS. The neuro told that usually fascicullations are first (or in the same time with weakness) but sometimes there is no weakness and atrophy in first phase of ALS.

So, what is the truth? Is weakness ALWAYS first or only ALMOST ALWAYS?

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Postby dwl on June 13th, 2003, 9:00 am

6.7% of als presents with twitching first. The weakness will usually come on fairly quickly after this. If you have twitched for more than a few months without weakness then that is very much in your favour. Remember also that a normal emg (as I think you have already had) 99.9% rules out als.
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Postby Pole on June 13th, 2003, 9:15 am

Thanks for fast answer.
Is 2,5 months without weaknes long enough? I know there is no rule, but maybe you have other statistics?

I had EMG and was described as "normal" despite 2 fibrillations founded in one muscle (4 were examined). What do you think about these 2 fibrillations? I was told (by 3 neuros, that single fibrillations during EMG is nothing wrong and sometimes happens). These fibs are what I'm afraid the most now.

What do you think?????

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Dr. 's have to cover their buts

Postby KERRI on June 13th, 2003, 9:45 am

If a Dr. ever tells you that you do not have something he or she better be sure of it, because you can screw them royally if they are wrong. So, doctors do not like to come out and say things like that, I believe it was Jenn who told me the longest anyone went with fasciculations and no weakness was 13 months, and that was a very very rare case. I do not believe that that person had an emg.


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Postby Rich Longer on June 13th, 2003, 10:09 am

I think you have to keep things in perspective

ALS is not a common disease.
ALS does not usually present with twitching alone
It is said that by the time twithcing appears there is weakness to be found on neurological testing

If you are looking for certainty you cannot ever have that but the odds are very much in your favour.

if three neuros have said you are OK - I would beleive them.

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Postby dwl on June 13th, 2003, 11:26 am

concisely put, Kerri!
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Postby tlotoxl on June 14th, 2003, 4:15 pm

edit: oops, sorry, this got addressed elsewhere in more detail.
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