comfortable with ALS
Distinguished member
- Joined
- Sep 24, 2007
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- 111
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- mi
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- st.clair shores
I have had Fasiculations for 10 years now. Started when I was 26.
I has other symptoms too, a degree of weakness among them. I sought out help and a number of doctors (3 neurologists incld) and all they could tell me was I had an anxiety problem. Well, no kidding!. Everything I've read says this points to ALS. The worst disease (in my mind) known to man. I was never able to even get a doctor to acknowledge I was having Fasics. Since I knew for a fact they were wrong on this point, I felt they could be wrong on the Non Als diagnosis. I went through 2 1/2 years of hell. Everybody thought I was Crazy. My Family Doctor even wanted me to see a Pyschiatrist. I was convinced I had ALS and nobody could tell me different. I felt it was just a matter of time and the weakness would hit heavy and the EMG would start picking it up. I ended up losing everthing in my life. My Wife, Job, House, everthing. After 3 years passed and the weakness had not progressed I felt it was some strange variant of an MND, and it wasn't happening fast. I went back to work and rebuilt my life. Today I still am a little weak and the Fasics are as strong as ever. But all my concern over ALS is long gone. I have only recently come across the Term "Benign Fasiculation syndrome". It really pisses me off because if even one of those doctors had given me any credibilty and even mentioned BFS, I could have avoided so much loss. Anyway sorry for the long story, but I wanted to tell anyone who may have concerns about Fasiculations and even some weakness, that ALS isn't a forgone conclusion.
I has other symptoms too, a degree of weakness among them. I sought out help and a number of doctors (3 neurologists incld) and all they could tell me was I had an anxiety problem. Well, no kidding!. Everything I've read says this points to ALS. The worst disease (in my mind) known to man. I was never able to even get a doctor to acknowledge I was having Fasics. Since I knew for a fact they were wrong on this point, I felt they could be wrong on the Non Als diagnosis. I went through 2 1/2 years of hell. Everybody thought I was Crazy. My Family Doctor even wanted me to see a Pyschiatrist. I was convinced I had ALS and nobody could tell me different. I felt it was just a matter of time and the weakness would hit heavy and the EMG would start picking it up. I ended up losing everthing in my life. My Wife, Job, House, everthing. After 3 years passed and the weakness had not progressed I felt it was some strange variant of an MND, and it wasn't happening fast. I went back to work and rebuilt my life. Today I still am a little weak and the Fasics are as strong as ever. But all my concern over ALS is long gone. I have only recently come across the Term "Benign Fasiculation syndrome". It really pisses me off because if even one of those doctors had given me any credibilty and even mentioned BFS, I could have avoided so much loss. Anyway sorry for the long story, but I wanted to tell anyone who may have concerns about Fasiculations and even some weakness, that ALS isn't a forgone conclusion.
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