Breathing got much worse...couldnt speak. ( I didnt have enough air to move my vocal cords). Prednisone wasnt working. So we went to ER. I had all my info printed out :
I have Myasthenia Gravis. I may be unable to speak or breath very well. Here is is my insurance info, med list and Dr's name.....(I highly recommend this. Carry it with you).
Anyway, we started with solu medrol and when that didnt help, IVIG for 5 days. It really helped but my legs and hands were much worse than before so after much debate, I was sent to a rehabilitation center to try therapy to improve what I could without wearing me out. They actually understood MG ( I was shocked)...they knew pushing me and weights are not the way to go. They knew there is just a small window to work with MG patients to tone what we have without fatigue so we dont get worse. They also gave me pulmonary rehab to help my diaphram (which wasnt moving at all in the ER and before IVIG)...Occupational therapy gave me some great tips on conserving energy around the house, and the big thing is the physical therapists had braces made for my legs. Now my knees now longer lock when I walk and my toes dont drop. Why didnt anyone suggest this before? They have really helped. Also, they ordered a power chair for me and want me to use it for part of my day to save energy for the walking I want to do.
Getting that bad was really scarey but IVIG and rehab were a blessing...now I feel I will be stronger for any exacerbation in my future.