The only way to know it is working is that your symptoms don't get worse as you taper off other treatments. I always forget to add that I am on IVIG also. I go weekly with .5gm/kg of weight. I used to go bi-weekly with 1.0 gm/kg of weight, but the 2nd week I was much worse than the 1st week. I talked to my neuro and he agreed that we could lower the dose and make it more frequent. I've been doing this for about 3 months and so far, I am more stable week to week.

My neuro is great about calling me back quickly and being willing to try changes in my meds. He understands that not all mg patients are the same. I have referred 2 other mg patients to him that I have met in our area and I have told him I am going to make him the mg expert for our area. He laughs and agrees he will try. Out of the 7 neuros in his practice, he has the most mg patients by far. He told me I made him feel guilty if he doesn't take any mg patients who call looking for a neuro. I told him that's what he gets for being understanding and able to communicate.

Sassy doesn't change much month to month. She is 11 years old now and I keep her hair pretty short!