Myasthenia Gravis Support Group

Hello Adams, and thanks for the info. It looks good. What I would offer to you at this point: less is always more. I confess to raising an eyebrow as well because "just play with it" is a suggestion often given to seasoned mestinon-takers. He must have a good sense of you. Track it on paper to see if a pill in the am works better than, say, early morning, or before meals, etc., or alternatively, do what feels good to you.

Hello Val, I sure remember what the twitching felt like. Has your physician ever suggested 30 mg (half a tab) every two and a half, to three hours-ish? The reason for asking is that taking another 30 mg within your reported time, could be the culprit, or not...

I have been on Mestinon for over 6 years as it is my primary course of treatment with Imuran (post-thymectomy) and have had several side effects over the years. I had digestive tract issues prior to Dx, so I have the typical diarrhea and nausea. I have also over the years been able to play with my dosage and see what works best for me. I also am prescribed (maximum) 2 po 3 x daily and it varies with my amount of symptoms.

Oh I forgot and the twitching drives me crazy, but we all get used to it that has this side effect

It work perfectly for about 2 weeks and now I'm having a hard time trying to get it right! Why all the sudden would it not work the same? Maybe it's not the right treatment for me or maybe I'm just impatient??

Hi. I've had three igiv infutions. I've noted small improvements. I had no big sudden change with each infustion. I think the key hear is to understand MG. MG is so variable in it's effects from each person. The infustion process takes a pool of antibodies from 100's of people. It could be that the first time you hit the jackpot with just the right match. Your improvement is linked to how long and how many episode you have had, plus the degree of your problems. I'm 70 year old and had my first episode at 67 then went into remissions 4 months latter. Then it came back with a vengeance one year ago. I'm retired, electrical engineer manager. I've spent considerable time studying MG. So many conditions are secondary problems not related to MG. They effect you because your imusystem has been comprised. Most doctors (nro's) I've seen don't understand this. Anyway if I can help please write back. I'll see if any of my experience happen to match my conditions. I have found many small things that have improved my life while fighting MG. Good luck (Steve)

Hello Adams Mestinon is very very tricky (for me at least) It took me literally years for my neuro and I to figure out amounts and such. We are all so very very different and I have learned a ton about my body make up and responses to meds in the past 6-7 years. Patience will come with time dear, traditionally I was an extremely impatient businesswoman. WOW how that has changed keep your chin p and remember. We are all snowflakes BUT we DO NOT melt <3

I love that last comment EmilyH. If you don't mind, I'd like to put that comment abt the snowflakes in my encouragement file. I'm on Mestinon 60mg 5x a day... if I can remember. Anyway, I found out the hard way, if I take too much, its got the reverse reaction.....where if I take the right dose, it works just fine but it's short term so I need to space my doses out....hence I usually forget to take ther rest...but that's a whole nother can of worms. Take care...hang in there...one day at a time...like my mom tells me...every day is new day :0)

Katl of course you can use my personal tagline and it took me years to figure out my Mestinon with my docs, chin up and remember WE are ultimately in charge of our body and our health

Hello and welcome. I was diagnosed almost a year ago and have gone through many treatments and hospital visits. I have found that there are changes in how the mestinon affects me and as my body responds and or reacts to treatments or changes I experience due to different medications. I have found that over exertion, emotion and those wonderful female hormones all play a part in how I am doing regardless of any changes I would make to my mestinon. So try as I may and play with the doses all I want, there is no reliable result for me. But I do notice a difference without it. It's just variable as life with MG. It takes some getting use to and I am still a work in progress. Take care, Mischelle