Thanks for your replies! I forgot to mention that the Dr on duty in the hospital referred me for some specific neuromuscular/lung function type tests. He said they will be in about two weeks. Unfortunately I think the ephedrine will be a risk for me with suspected carotid sinus hypersensitivity, which dramatically effects my heart rate. I don't have a date for my neuro appointment yet, I'm still waiting to hear from my GP (he was meant to call today...). I asked to try a trial of mestinon but he says he's not authorized or confident to give me the trial because of the CSH and was going to check with a neuro and come back to me. I'm staying with my parents now who are very supportive and we just installed a monitor in my room in case I get in trouble during the night again. The only trouble is I'm two hours from the nearest hospital so we're quite far from help. I'm not taking any medication at the moment, I seem to be extremely senstive to a lot of things that really exacerbate the muscle weakness.
Thanks again for all your support...