I know this is a little verbose but please read this if you think you have ALS -- especially if you're twitching...
About a year ago, I started twitching and got the ALS scare from a bad Google search. I tried going to the aboutbfs.com forums for some healthy reassurance that it was nothing, but due to spam issues, I found out that the site takes awhile before your account is validated. I wanted answers now, though, so I found myself over here at the ALSforums.
Bad idea.
I read some of the stories of the PALS here and convinced myself I had ALS. I shut down. I quit my job, lost all my friends, and found myself having panic attacks daily for months completely alone while developing all sorts of new neurological "symptoms". What's worse is that I was now incessantly bugging people who actually had this horrible disease to try and qualm my own fears like a selfish a$$.
Just recently have I been able to slowly convince myself that I'm not dying. I've ruined a good portion of what were supposed to be some of the best years of my life (my 20s), and I don't want other people to go through the same.
So, I've decided to start an alternative community for those like me: "The BFS Forums". I've just launched the site and have invested a lot of time, money, and energy into it because this is something I care about. I also am an Emory alumni and have connections with the medical school (well-known for its ALS clinic and for being on the cutting-edge of drug design) and am talking to some neuros to do some articles and answer some forum questions to help calm people's fears. Registration is instantaneous, so please, if you're twitching or having weird symptoms and think you have ALS, get off here and come over.
Mods, sorry if this is too self-promotional. But I really don't think this is the place for people with ALS fears to be. It definitely wasn't for me.
About a year ago, I started twitching and got the ALS scare from a bad Google search. I tried going to the aboutbfs.com forums for some healthy reassurance that it was nothing, but due to spam issues, I found out that the site takes awhile before your account is validated. I wanted answers now, though, so I found myself over here at the ALSforums.
Bad idea.
I read some of the stories of the PALS here and convinced myself I had ALS. I shut down. I quit my job, lost all my friends, and found myself having panic attacks daily for months completely alone while developing all sorts of new neurological "symptoms". What's worse is that I was now incessantly bugging people who actually had this horrible disease to try and qualm my own fears like a selfish a$$.
Just recently have I been able to slowly convince myself that I'm not dying. I've ruined a good portion of what were supposed to be some of the best years of my life (my 20s), and I don't want other people to go through the same.
So, I've decided to start an alternative community for those like me: "The BFS Forums". I've just launched the site and have invested a lot of time, money, and energy into it because this is something I care about. I also am an Emory alumni and have connections with the medical school (well-known for its ALS clinic and for being on the cutting-edge of drug design) and am talking to some neuros to do some articles and answer some forum questions to help calm people's fears. Registration is instantaneous, so please, if you're twitching or having weird symptoms and think you have ALS, get off here and come over.
Mods, sorry if this is too self-promotional. But I really don't think this is the place for people with ALS fears to be. It definitely wasn't for me.
