Hi Caroline,
Thanks for this, I did see it as I am constantly looking for more information. I am not happy with the way things are.
Diet wise my husband eats very little. I have been keeping a food and drug diary to see if we can detect a pattern but so far nothing has jumped out except that this all seems to have got much worse since being put on Prednisone. For three months now he has hardly been able to walk at all even immediately on waking in the morning. I thought that improvement after rest was the "key" diagnostic symptom. Rest only has a minimal effect on him, after a "nap" he can keep awake for roughly two hours but he doesn't actually feel wide awake even then. He doesn't have the classic drooping eyelids which was his very first symptom so we know what we are looking for, he just falls asleep. I'm sure there is something else going on here but I have no idea what.