Carol's post

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Carol's post

Postby KERRI on June 22nd, 2003, 5:09 am

I have not been able to concentrate since Carol's post, I mean she started twitching around the same time as me, she had a negative neuro exam and emg, until the wasting of her muscle they did not think she had ALS. I am very scared, she also went to three neuros.

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Postby dave YY on June 22nd, 2003, 6:28 am

Kerri,

You don't even have BFS, much less ALS!!! You simply don't twitch enough to have any reason to worry whatsoever. Here is what a twitcher generally experiences... Since this morning (I live in Italy so I'm ahead of most of you) I have twitched at least hundreds and probably thousands of times, and probably about twenty to thirty times on my tongue alone. Plus I've got another bout of tongue fatigue, all of which has waxed and waned for almost five years now. In my first year of twitching it was even worse--I'm sure I twitched a few hundred times an hour. Probably more.

Carol's post is disturbing, even to me, but geez you have nothing to be concerned about.
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Postby KERRI on June 22nd, 2003, 6:42 am

dave YY wrote:Kerri,

You don't even have BFS, much less ALS!!! You simply don't twitch enough to have any reason to worry whatsoever. Here is what a twitcher generally experiences... Since this morning (I live in Italy so I'm ahead of most of you) I have twitched at least hundreds and probably thousands of times, and probably about twenty to thirty times on my tongue alone. Plus I've got another bout of tongue fatigue, all of which has waxed and waned for almost five years now. In my first year of twitching it was even worse--I'm sure I twitched a few hundred times an hour. Probably more.

Carol's post is disturbing, even to me, but geez you have nothing to be concerned about.


The thing is this post puts doubts in my mind again about what the doctors have said and about negative emgs.

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Postby dave YY on June 22nd, 2003, 6:50 am

But you don't really twitch more than normal... You have LESS chance of having ALS than the average person because the average person hasn't had a negative EMG!
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Postby uber on June 22nd, 2003, 12:36 pm

Kerri you are going down the wrong route, to cure yourself you dont need to see a neurologist you need to see a Physchiatrist, nobody is saying these problems you have arent real, I know you are suffering from neurological problems but its getting to the point that every time you twitch and have a strange feeling someplace in your body, you are exagerating it, Im not neuro or shrink but your posts and stories all to me make a very strong presentation for problems that are tied into a physcial presentation of an anxiety/panic & obsessive disorders.
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Postby reneeintx on June 22nd, 2003, 2:17 pm

This whole thread is making me sick in my stomach. I've had only one clean emg, and neuro exam.

Carol never said she had weakness??? I don't either :(

I wish I knew a gypsy so she could look into her crystal ball and foretell my future. Maybe it's just as good as an emg??

Sh##!! This twitching nightmare is mentally draining. :(

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Postby dwl on June 22nd, 2003, 3:04 pm

Carol said she had difficulty swallowing - that's weakness (of the swallowing muscles).
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Postby Brian_B on June 22nd, 2003, 3:33 pm

Carol said she had weakness(of swallowing muscles) as well as atrophy.

if you do not have either of those, you shouldn't worry.


if you go back and read her posts the weakness and atrophy developed relatively soon after her symptoms began.

it was 9 months ago she said she noticed symptoms, but it was about 3 months ago she posted about the difficulty swallowing as well as the atrophy.

while her EMG and exam might have been normal or semi-normal when she had it soon after symptoms started, chances are if she had an EMG and exam a couple months ago they would not have been normal.

I been twitching for about a year and a half, but I didn't have an EMG or even go to a neurologist until about 6 months later, which was more than enough time for any serious diseases to have shown up on the EMG and exam.
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