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Jenn311 wrote:Hey Kerri...
Crud! I knew I shouldn't have posted that...but it seemed essential in representing how much influence our psyches have on our body. there is a way to rule out ALS, and it's an EMG, of which I have never had one. You, my friend, have had four. That pretty much rules out ALS. So you are fine, just repeat that and make it your mantra!
~Jen
reneeintx wrote:Kerri~
I'm like you. I'm okay most of the time and then one article about some odd ball case of ALS and the freaky me starts emerging.
I go to another health board frequently and there is an ALS forum. I know people here are thinking.. why are you going there?!? It's like the forbidden fruit.. you are so tempted you have to taste.
There's a post about this guy's dad having symptoms of ALS and it took 2 years for him to be diagnosedIn the post he says his dad has twitches in his legs and feet and cramps also. That's exactly what I've been having.
I had to pm Jenn and Arron, after reading that post and getting cramps that night.
I was crying and my husband was trying to console me saying there could be numerous factors that played into the story. Such as neuro's that don't see ALS very often, or the man didn't pass the initial neuro exam(strength, walking) and maybe his emg had something suspicious going on. I don't think we ever get the WHOLE story when we read these posts.
You know the more we worry the more we'll twitch. We can't zero in on these odd ball cases and throw everything else out the window.
Renee![]()
Listen to Jen, she's dealt with this stuff for quite some time.
dave YY wrote:Kerri, Kerri, Kerri!
None of those are really "odd cases." Sometimes people twitch first before weakness, and usually it starts in one spot from what I've read. A two year dx process doesn't mean they had no idea for two years... It could have been related to so many different factors, such as the requirement that at least three limbs show denervation, or they might have taken more time ruling out all other possibilities, or the patient might not have come in frequently enough for a speedy official dx.
I've spent more time on the Braintalk neuromuscular board, but it looks to me like the same is true here: nobody who's come here with twitches, with a clean EMG and clinical exam, has gone on to get ALS. It's consistant with the Mayo study.
Why do people here who are scared of ALS wish for it to be rapidly progressing? The father of a friend of mine has had it for 21 years and he still gets around and talks fine and is enjoying life...
alive wrote:I must say I don't find this type of discussion helpful at all. I come to this site to get reassurance that even though I twitch and my jaws/hands/throat or something else may feel strange, I'm still not dying a horrible death in the near future..
Arron wrote:Move-on! And, if I see more posts like what's in this thread, with the "whoa's me. It must be a bad disease" It isn't normal to twitch"... blah, blah, blah garbage, I'm going to start deleting them! It doesn NO ONE any good to hear unfounded and unsupported statements like those!
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