99% of PALS Show Specific Problems

[Pleaseyprovideyoney]

I have a feeling your neuros are digging in dirt. After many, many month of my own "internet research" (outch) and doctors visits(three in US and one in my home country Germany), your neuros statements truly sunrises me. They really should do a better job to define what "not quite out of the woods" actually means. The first doc you saw mentioned that 99% of pals show specific problems on there first EMG if fasciculations are clinically present. Why wouldn't he clear the ticket after your last visit years later?
I believe he (and therefor you) should not share theoretical 'possibilities' if they become insignificant. Your odds to get killed by a car accident in the next five years are probably much higher than dying of a disasteres neuro disease.

 

[Pleaseyprovideyoney]

My als specialist announced that one year of non progression is sufficient to leave the worries beyond, ....for good.
My fascis actually increased at my one year mark, and included several bulbar muscles. (i twitch at such intensity that it triggers coughing, a couple of month ago my neuro observed twitches around my chin area I
have never notice before)
I am 15 month into this now and still get new hot spots.

What is your twitching like these days, and how does it compare to the beginning days?