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Timeframe ?

PostPosted: December 15th, 2008, 3:06 am
by lostboy
Hi,
I was wondering if some of your neuro's gave you any timeframe, meaning if the twitching was due to *** when would you start to notice weakness?
My calves and feet really go 24/7 and really hard , all the time, I just can't believe this is not ALS
I feel them all the time!

Dieter

Re: Timeframe ?

PostPosted: January 30th, 2009, 3:31 am
by sharon slack
Hey

According to the neuro I see twitching is not the first symptom on most occasions; You will find you have other symptoms and twitching is the result of the dying nerves.
Still twitching like a champion after 8 years!!.

Sharon

Re: Timeframe ?

PostPosted: January 31st, 2009, 5:31 pm
by jeje3
Dieter, fascics in ALS may (rarely) be the first and only thing that patients are aware of, but a neuro exam will pick up issues in addition to fascics. Issues patients may not even have been aware of. Fasics only & normal clinical neuro exam = no ALS, not in 1 year or 2 months, but right away.

Re: Timeframe ?

PostPosted: February 13th, 2009, 8:43 am
by Pole
Hi everyone :mrgreen:

I'm here after a few years...I posted my first message in 2003...I was twitching a lot and I was sure I had ALS (you can read my old posts)...Now, after 6 years, I twitch from time to time but I'm sure that has nothing to do with ALS...twitching alone really means nothing...no weakness - no ALS...remember...

regards
marcin

Re: Timeframe ?

PostPosted: February 15th, 2009, 6:56 pm
by sharon slack
Hey

Thanks, thats what a few people here need to help them move on. People from the past that are still fit and well, but unfortunately still being hit with a few twitches.

Thanks

Sharon

Re: Timeframe ?

PostPosted: February 17th, 2009, 10:20 pm
by tonyfeist
I haven't looked at this site for years, started the twitching in early 2003, and was scared *beep* by a stupid googling of the symptoms, you all know what I mean. ... But it has come and gone over the years, but maybe I just don't notice it any more and above all have stopped worrying about it. Still get the occasional 'hot spot' but so what? I am otherwise quite OK and strong as ever, though noticing the encroaching years, but that's another story .... Tony :D

Re: Timeframe ?

PostPosted: April 6th, 2009, 10:51 am
by fox2run
Timeframe: when you die of something else, you would know for sure that it wasnt als, that killed you... :wink:

Re: Timeframe ?

PostPosted: April 6th, 2009, 11:55 am
by Dreamscape
I have read in a Neurology textbook that only about 6.7% of patients diagnosed with ALS presented with fasciculations as their primary symptom.

Re: Timeframe ?

PostPosted: April 6th, 2009, 12:36 pm
by Angst1986
Dreamscape wrote:I have read in a Neurology textbook that only about 6.7% of patients diagnosed with ALS presented with fasciculations as their primary symptom.


Okay, and how many of them were non-localized? I read that a bodywide onset of twitching actually can't even be an **S-symptom at all... Does your book say something about that? Just curious...

Re: Timeframe ?

PostPosted: April 6th, 2009, 6:24 pm
by fox2run
6 % of a disease 1 out of 100.000 get. Thats something like 1 in 2 millions. If you are under 40 it will be 1 out of 20.000.000. And if we are talking widespread fascics then it is perhaps 1 out of 100.000.000. Perhaps even less. Well. Its not like I want to spoil your day, but its far far far more dangerous to take a ride in your car... Or even get out of bed....

Re: Timeframe ?

PostPosted: April 6th, 2009, 6:29 pm
by barbo4
I think I like those odds

Re: Timeframe ?

PostPosted: April 9th, 2009, 2:18 am
by Blizna
Angst is right. Actually, the last research proved that the figure is about 13% but NOT WIDESPREAD. Not even one patient had fasciculations in more than one muscle group,i.e. innervated from the same anterion horn cell. Actually, the twitching is present during weakening as the muscle loses its innervation and if the weakness cant be detected (altough its present in its minimal form) patient really thinks he only twitch.
About the timespan - every month decreases the chance of getting ALS by 10% and it stops on 99% of course. After one year, there are only few cases described in almost 150 yrs history of ALS.

Re: Timeframe ?

PostPosted: April 9th, 2009, 5:35 am
by fox2run
So its closer to 0 than 1/100.000.000? Hmm perhaps I should find something else to worry about...

Re: Timeframe ?

PostPosted: April 9th, 2009, 8:23 am
by AndyTwitchalot
fox2run wrote:6 % of a disease 1 out of 100.000 get. Thats something like 1 in 2 millions. If you are under 40 it will be 1 out of 20.000.000. And if we are talking widespread fascics then it is perhaps 1 out of 100.000.000. Perhaps even less. Well. Its not like I want to spoil your day, but its far far far more dangerous to take a ride in your car... Or even get out of bed....


:D lol, thanks for the perspective foxrun

Re: Timeframe ?

PostPosted: April 9th, 2009, 12:47 pm
by Chris_uk
Blizna wrote:Angst is right. Actually, the last research proved that the figure is about 13% but NOT WIDESPREAD. Not even one patient had fasciculations in more than one muscle group,i.e. innervated from the same anterion horn cell. Actually, the twitching is present during weakening as the muscle loses its innervation and if the weakness cant be detected (altough its present in its minimal form) patient really thinks he only twitch.
About the timespan - every month decreases the chance of getting ALS by 10% and it stops on 99% of course. After one year, there are only few cases described in almost 150 yrs history of ALS.


hmmm see this is what bothers me, mine is not wide spread, never has been, always in my right calf, no where else ever apart from a tiny tiny few in my left calf