Erin, Ireally am saddened to hear that you are saddened and confused. That is 2 words I have found common since being diagnosed with MG about a year age. As others have said, heed the advice of your Neuro. Like you, I trust my Neuro 100%. He seems to be the only Dr. I have seen that somewhat understands this disease.
My prayers and thoughts are with you as you have been a "Rock" for me and helped me so much with your thoughts and understanding. Just remember, God has a plan for us all and put your trust in him. He will work things out.