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Ben, thank you for taking the time to share all of this. It’s beneficial for all to hear the path you’ve been on and what you’ve figured out through trial and error.
The way you described the shift from standard dosing to experimenting with the extended-release Mestinon makes a lot of sense, especially since side effects can show up so differently from person to person. It’s clear that you’ve been paying close attention to your body’s signals and how the medication affects your day-to-day functioning, especially with the cramping and the eyelid twitching you dealt with early on. That kind of self-awareness is huge in this journey and serves as an excellent reminder for everyone.
MG cramping can be miserable, and many members talk about how unpredictable and stubborn it can be. Stories like yours help remind others that sometimes the first regimen a doctor suggests doesn’t work for everyone, and that working with a care team while also observing your own patterns can be an essential part of managing MG and finding what works for you.
-Jodi, Patient Advocate