Originally Posted by wvfox

I am also newly diagnosed, I am also so confused about what I am supposed to do and how bad does it need to get before the doctors change meds or whatever they can do. I take 90mg mestinon every 3-4 hours plus an extra 60mg in between if i can't breath, 50mg prednisone daily, starting Imuran today, have had 2 5 day courses of ivig in the past 2 months. I live in a very rural area and doctors here don't seem to know much about mg. I am traveling 2 hrs. away to see a neuro. i can't keep my head held upright for more than 10 min. very short of breath, choking on my own spit, and my vision, when I can keep my eyelids open is horrible. The doctors have never given me any info on mg or said if this or that happens, do this. i just wonder if anyone else out there has had this experience, and how they handled it?