Benign fasciculation syndrome

[Jbarn1976]

It’s long so I’ll apologize in advance. Six years ago I had the LINX Reflux Management Device implanted to control my laryngeal reflux that I have suffered with since ‘09. After about 9 months I started having issues with it that spanned 5 years until I had removed in ‘20. The issues included electric shock sensation in the body (it’s implanted 1mm away from the vagus nerve), and heart attack symptoms. In 2017, I had a EGD to see if it was keeping reflux at bay, and the G.I. Doc told me it was the first EGD where they saw no damage. In 2018, I started having swallowing issues, another EGD revealed that I had Presbyesophagus (esophagus makes a corkscrew shape), with no explanation as to why, because there was still no damage to the lining of the esophagus. In December 2019, I started having muscle fasciculations, and in April of ‘20, had a NCV/EMG, all clean. I was told I had Benign Fasciculation Syndrome. Since then I have had 2 more EMG/NCV, both clean, and the last one was in September of this year. After the last EMG/ NCV, I have had swallowing problems, jaw spasticity while eating, jaw weakness, fasciculations in areas where they have not been in the previous two years, and voice weakening issues. The neuro docs have stopped listening to me because they believe I do not have ALS. I gave them my theory that the LINX device damaged my Vagus nerve and it set off ALS, but they won’t hear it. I told them I would not be telling them what’s been going on if everything had stayed stable, but they would not test the muscles I told them I was having issues with, they just kept telling me it’s not ALS. My next appointment is on December 20, with a completely new doctor. My question is this. Is there anyone with Benign Fasciculation Syndrome, that has swallowing issues, tight jaw when chewing, and weakened voice all at once?

Thanks

[jojo2316]

Hi jbarn-
i have BFS and also perceived swallowing weakness and slurred speech. I have also been cleared of ALS in the past. I think you do need to trust your neurologists…. They know the signs. I think body wide symptoms like you describe - and like I have - are far more likely to be anxiety

[Jbarn1976]

I appreciate your reply. In regards to speech. I’m not having slurred speech just a weakening of my voice. Like I have to push more air to get the same volume. Also, I’m having issues making and maintaining certain pitches. Are you having these issues? Also, I have muscle spasticity in my back that started about a month ago, have you had that issue as well?

Thank you.