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Re: There are more twitchers than we realize

PostPosted: January 28th, 2014, 3:50 am
by DaveCH
Rothaar,

I was under the impression that nobody had developed als on this site. You have me worried now. The person who developed it with widespread twitching, did something show up on there clinical etc or what was the details behind this case.

Re: There are more twitchers than we realize

PostPosted: January 28th, 2014, 4:19 am
by TwitchyDoc
Dave, Rohktaar might not have meant it this way. There were two (if I remember correctly) cases but doctors suspected ALS right from the beginning - he found slight finger weakness that guy did not know about. And he started with cramps in hands. This is not like BFSers story.
Do not worry, there are exceptions to this rule but these are likely to occur in older people and still very rare.

Re: There are more twitchers than we realize

PostPosted: January 28th, 2014, 11:05 am
by leaflea
What I'd like to know is, how many more twitchers are out there reading this forum but not registered? An example is Little Lost, lurking for more than two years with anxiety and twitches. Often, folks come out of the wood work and mention having been reading the board for a long time before coming out. I also have noticed only over 4000 posters in 12 years for a worldwide forum...gives the impression it is rare. Then, there is my friend who lives less than a mile from me who I learned has had this for 13 years, including great fear and anxiety, but did not have a neuro exam until 8 years ago. Rare or common? Who can know? My primary doc said he sees about two new twitchers per month come in with a complaint of fasciculations, but has never seen a case of ALS. My EMG tech said she sees a fair amount of twitchers, but far fewer with ALS and she recognizes ALS presentation immediately on EMG. She's not even a doctor, but the EMG behavior is unmistakable. Many people make off hand remark that their eye is twitching if they are tired or stressed, I know that is a far cry from what we go through, but still seems to be related and somewhere on this spectrum if we think of it that way.