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You have to keep the doctor in the loop if you are having problems with the treatment. When I started the journey in 2009 I was was put on all the different medications. Luckily I was switched to another nuero team and that made a big difference.
After only problems with the medications was IVIG tested. I had no problems with the first infusion so a plan was put in place. I started at 3 500ml infusions every 4 weeks. After problems were worse again I was bumped to 3 times every 3 weeks.
IVIG handles my problems very well, however, I still have some issues. My vision has changed and I notice it quite often but I learned to change what I was doing or take a rest. If working hard, my vision will go wacky but I can often adjust. The worst is when my energy just goes away. I have learned to identify when that is happening sooner and make a rest stop before things go bad.
I need to watch what is happening as I do stuff and am aware of warning signs that indicate I need to do something. Prevention is very important to handling MG. My infusion nurses are great at spotting things and my nuero team is very accommodating. They are quick to refer me to another group for testing to verify if I have something else happening or if I need to change my routines.
Most doctors are not very familiar with MG. If you are having problems with your treatment discuss it with your doctor. If necessary, ask for a referral to another specialist for some advice on the problems you are having. Your regular doctor may also be very helpful and may have some recommendation for your neurologist.