Hi all, I was a regular poster on here a while back. I have been absent from here doing the things we do in life, and I thought I'd come back and see how everyone is doing.
As for me, I am doing great. Still have ALL the crazy symptoms, the 24/7/365 fascics all over, the fairly severe cramping in my hands, the extreme tiredness, basically everything that caused me to worry about ALS in the first place (sorry I don't use the *** substitution for ALS, I just always like to confront things head on). In short, I am still twitching, after...gosh what has it been...2 years? I had my last (and final) EMG about 4 months ago, and the neurologist (my second one) told me that the odds that this was ALS were about non-existent after that amount of time with no progression of weakness and normal EMGs. At that point I just decided that there are better things to do in life than sit at home worried about my condition, and I really haven't thought about it much since then.
One more thing I should mention, I hope this makes some of you feel better. I know someone who works as an OT in a nursing home and they recently got an ALS patient. He was a surgeon, who one year and a half ago was perfectly fine, doing surgeries and nothing was wrong. In the space of 1 1/2 years, he has gone from normal to bedridden, unable to move a single muscle, and rapidly dying. Now, I know this is a horrible story, but it has an important lesson: this is the way ALS usually progresses. His is the normal course of this disease. So many of us who have been twitching for years think that we have some super-slow version of ALS, but the fact is that is extremely uncommon. This is not the kind of disease where you sit around for months on end and wonder if you have it, you just KNOW. You would have rapidly declining function, and although it takes many sufferers a while to get formally diagnosed, it is evident from the start that something is terribly wrong, and their doctors, if they are any good, know it. Anyhow, I don't know if that helps, but even if it doesn't remember that I was absolutely 100% convinced that I had ALS a year ago. All the signs and sypmtoms pointed to it, I had every one of them. Guess what, I don't have it...and I wasted a whole lot of good time thinking that I did.
One good thing that has come out of this: I have learned an awful lot about a terrible disease, and also learned alot about a not-so-terrible condition (BFS) that mimics it but is far more common.
So take that for what it's worth, one person's story. I think my story is similar to many on here, the fear, the unknown, the bad doctors who don't know the first thing about bedside manners, the chilling late night internet research, and nobody to talk to about it that doesn't think we are insane. I guess after all that emotional turmoil, we fully expect that the ending to the story just HAS to be as dramatic, some fatal illness that will make our families cry. Then we slowly come to realize (with many relapses) that we just have some crazy little thing that makes us twitch and it feels like a false ending. An anti-climax. But I'm here to tell you that, probably for all of us on here, that really is the end of the story. I've finally decided to close the book. Thank you all so much for your support, if there is anything I can do for anyone, I will be happy to do what I can.
As for me, I am doing great. Still have ALL the crazy symptoms, the 24/7/365 fascics all over, the fairly severe cramping in my hands, the extreme tiredness, basically everything that caused me to worry about ALS in the first place (sorry I don't use the *** substitution for ALS, I just always like to confront things head on). In short, I am still twitching, after...gosh what has it been...2 years? I had my last (and final) EMG about 4 months ago, and the neurologist (my second one) told me that the odds that this was ALS were about non-existent after that amount of time with no progression of weakness and normal EMGs. At that point I just decided that there are better things to do in life than sit at home worried about my condition, and I really haven't thought about it much since then.
One more thing I should mention, I hope this makes some of you feel better. I know someone who works as an OT in a nursing home and they recently got an ALS patient. He was a surgeon, who one year and a half ago was perfectly fine, doing surgeries and nothing was wrong. In the space of 1 1/2 years, he has gone from normal to bedridden, unable to move a single muscle, and rapidly dying. Now, I know this is a horrible story, but it has an important lesson: this is the way ALS usually progresses. His is the normal course of this disease. So many of us who have been twitching for years think that we have some super-slow version of ALS, but the fact is that is extremely uncommon. This is not the kind of disease where you sit around for months on end and wonder if you have it, you just KNOW. You would have rapidly declining function, and although it takes many sufferers a while to get formally diagnosed, it is evident from the start that something is terribly wrong, and their doctors, if they are any good, know it. Anyhow, I don't know if that helps, but even if it doesn't remember that I was absolutely 100% convinced that I had ALS a year ago. All the signs and sypmtoms pointed to it, I had every one of them. Guess what, I don't have it...and I wasted a whole lot of good time thinking that I did.
One good thing that has come out of this: I have learned an awful lot about a terrible disease, and also learned alot about a not-so-terrible condition (BFS) that mimics it but is far more common.
So take that for what it's worth, one person's story. I think my story is similar to many on here, the fear, the unknown, the bad doctors who don't know the first thing about bedside manners, the chilling late night internet research, and nobody to talk to about it that doesn't think we are insane. I guess after all that emotional turmoil, we fully expect that the ending to the story just HAS to be as dramatic, some fatal illness that will make our families cry. Then we slowly come to realize (with many relapses) that we just have some crazy little thing that makes us twitch and it feels like a false ending. An anti-climax. But I'm here to tell you that, probably for all of us on here, that really is the end of the story. I've finally decided to close the book. Thank you all so much for your support, if there is anything I can do for anyone, I will be happy to do what I can.