[Laura Shaughnessy]

I’ve had MG for 21 years. I’m grateful I’ve never been hospitalized or had respiratory issues. I’ve managed with 30 mg of Mestinon every 3 hours. I also have Crohn’s disease which is currently in remission. I’ve chosen not to go on immuno suppressant drugs with MG. When my Crohn’s was out of control I went on many different meds ALL had side effects that created need for more medications to control the side effects. Hence the reason I’ve chosen not to be on any MG immuno suppressant drugs. I also am unable to take steroids . I stay fairly active but can’t do repetitive type things biking, hiking or anything that demands constant muscle needs without a break. My vision is doubled after 20 minutes of computer use & I no longer read for longer than 20 minutes ( I use audiobooks), ptosis when facial muscles are tired or overused , leg muscle challenges when climbing stairs. My neurologist wants to try IVIG to see if symptoms will improve. We tried increasing Mestinon to 60mg but gastro side effects made that difficult. I’m frustrated with taking to little Mestinon & your weak take too much & your weak. I also thought it might be nice to see what it would feel like if MG effects were reduced or eliminated even if just for short period of time. I’ve resisted so far because I don’t have a clear understanding of side effects of IVIG on someone who does NOT take any other medications . Is there anyone who can speak of using IVIG occasionally to reduce muscle weakness and or reduce the amount of Mestinon taken. I thank you for your time in responding. Someone who’s tired of being focused on taking meds every 3 hours .