Abby, If you don't have an issue with needles, then maybe you can get permission to do Hizentra (the sub-Q version of IVIG) at home as a maintenance dose in between regular IVIG.

You know how drug effects can wear off with repeated use? Kind of like how drug "users" need more and more to get their "fix?" Sorry, it's not really fair to compare a needed drug to a "craved" one. Maybe your body is getting used to the effects and needs more. Just a thought.

I hope you'll let him know that you have concerns in general about not having the "proof" you really want of this disease. Be aware, however, that even Mayo says that they can't see the NMJ well in adults. Allegedly. Though there are numerous articles out there on seeing it in adults.

There is no easy algorithm for all this. What is good for you right now may not work in the summer. It's the "art form" of treatment, where you have to stay in touch with your doctor or have that "what if" plan, like you are trying to do.

I hope you can figure out what works well for you.

Annie