Originally Posted by bny806

most peoples tongues will undulate or twitch when sticking out, especially if strenous or feeling weak.. when they talk about ALS they talk about it twitching at rest in the mouth.. which is actually kind of hard to do - to keep it at total rest in your mouth.. but sticking it out.. is totally normal for it to twitch.. especially when you have muscle weakness....

I was initially told by the 1st dr that he thought I had ALS.. (before an EMG, and I was 30 years old), he had horrible bed side manner.. Life will never be the same from when those words came out of his mouth - just a different perspective on things.. anyhow.. I had slurry speech, swallowing issues etc at the time, so I asked all my friends and family to stick out their tongues I wanted to analyze theirs in comparison to mine haha.. I was freaked out (and with good reason).... I do have a triple furrowed tongue.. I have several family members with it as well, and it can occur in Musk myasthenia and other MG too.. I am 3 years into this fun, and my speech is much better now that it was then - thanks to IVIG..

I have heard of plenty of people with MG, CIDP, and with BFS that have tongue twitching.. Have you had a regular EMG yet? can't remember what you had said- many neuros will do tongue EMG's, but since it is so incredibly hard to have someones tongue be at complete rest it can be a difficult test.. so if they test your cervical (neck) and/or thoracic paraspinous muscles with EMG that is sensitive for bulbar MND/ALS.. I rested much easier when they did that to me (like my 3rd EMG).. and it was also negative.. I had PTSD from that initial dr apt!