I'm 25 years old, and I am on my second trials of Mestinon. The first time I took Mestinon was back in November 2010, and as they worked up my dosage, by the time I got to taking a full pill at one sitting, my thigh muscles were spasming so badly I could see it through my jeans. I hadn't taken Mestinon again until just recently. I've been on it for 2 weeks slowly increasing the dosage, by the time I got to taking full pills again, (which was actually last night), my calves and thighs were staring their twitching and spasming again, as well as feeling tingly (like pins and needles). They also felt shaky where I couldn't walk my normal pace because I felt like if I did, I would fall (like the top part of my body would try to go, but my legs wouldn't be able to keep up--thats a bad description sorry).

We contacted my neuro specialist but haven't heard back yet (we see him in 2 days anyway). The first time that happened to me was much worse, and let me tell you it was SCARY. I could also feel it in my cheeks like where my jaw joint is on both sides of my face.


I think it's also done nothing for me. I honestly feel like I've felt better WITHOUT the medicine than with it. My speech has actually gotten worse since I've started it and my eyes have been fine all along (since May anyway). I am MuSK positive too. Mine was first diagnosed with an EMG because my original blood work came back negative, but just recently got the longer (and waaaay expensive :x ) one done, and it showed me MuSK positive.


Hope you can work it out with your daughter I guess the good thing is, is from what I've read and was told it doesn't stay in your system too long so those feelings will go away, they are just very annoying until they finally do.