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?

Originally Posted by Fortunatos

Hello wvfox, Your post alarms me, and I'm going to suggest that you head to the nearest medical centre. If it's really bad, and your breathing is laboured and/or you are unable to swallow, then you need to call your emergency number. You are rural, and I don't know how far away you are from a centre. Go have someone take a look at you....GO......This, you don't fool with.