Too much versus too little Mestinon?
I’ve had Myasthenia Gravis (MG) for a year now. Some nasty other issues in March 2025 intertwined with it: a stroke and a nearly fatal salmonella infection started to create massive multiple organ shutdown, but gallons of the right IV antibiotics saved my life. Since then, it has been a real confusing diagnostic chess game. I’ll start by saying I’m a 71-year-old, normally fit, active man with a variety of interests pursued vigorously. It has been an awful change of life for me, and now I am learning to make the best of the sh*tty hand I somehow got dealt in a game I didn’t know I was in.
Triple Seronegative Diagnosis and SFEMG
I also happen to be one of the 5–7% of MG patients who are triple seronegative, meaning that repeated bloodwork shows no antibodies for AChR, MuSK, or LRP4. As I am learning, there is not much definitive treatment or literature for this brand of MG because it’s too rare. I finally won the lottery, I guess. I was eventually diagnosed by Dr. Bril’s lab, one of only two places in Canada that can perform Single Fiber Electromyography (SFEMG), which is the only way to tell for sure. SFEMG, by the way, is a walk in the park compared to regular nerve conduction studies. There was a six-month path of “you have MG,” “no you don’t,” “yes you do,” and so on. I share many common symptoms with others who have MG.
Questions Regarding Mestinon Use
My question is about Mestinon. What are the benefits versus the side effects? Should I take it regularly or just when an active day is coming? Should I take half a pill or the whole thing? Does taking half a pill last only half as long, or is the pill only half as effective? I would be grateful for any insights on this. There’s more to share, but typing this much has worn me out already. This seems like a great forum, and I am happy that others are sharing. I know personal details are not generally advised, but communication is how I got this far. My phone number is 705-623-2070; I would love it if anyone is willing to reach out.
Join the conversation