[lolabell]

I recently have been diagnosed with MG due to a positive Antibody test and clinical symptoms. At first I was started on Mestinon and then went to the ER due to Shortness of breath and difficulty swallowing. I was admitted to 5 days for IVIG and started on 80 mg of prednisone. I did get some strength back and was sent home only to return after 3 days because of worsening of weakness, swallowing difficulty and breathing. He felt that I was actually have a reaction to the prednisone. I was admitted for 10 days and had 5 plasma exchanges. I did feel much stronger was improved in my breathing, weakness and swallowing and was discharged home on Prednisone 80 mg and was to start Imuran on my follow up visit in one week. Well, after home for 2 days I felt weak again, short of breath and like my throat was closing up. I called the neurologist and he has me come back to the hospital and kept me over night. They did an EGD and said I had a stricture and dilated my throat. My neuro asked if I was having anxiety (Well duh!!) and that most patients have longer benefits from the plasma exchange and that he is puzzled. Since, I was swallowing ok he sent me home and I'm to follow up Monday at his office.
So, I came home Thursday and went to work today. I only made it 5 hours. My eyes, neck and trunk muscles got weak. All I could do is sit at my desk and barely hold my head up. I finally went and spoke to my boss and told her that I just couldn't keep upright and of course I came home and went to right to bed. Rest about 3 hours and now am up. I feel stronger than I did when I first got home but I not sure what to do!!
Sorry, so long but I am beside myself. Has anyone has all these treatments and still has weakness? Am I not giving it enough time.? Any advice would be so appreciative. I am so new to all this and I am so tired!
Thanks for listening (I guess that would be reading)
Lola