yeah we covered all the dos and don'ts of steroids. truthfully, i don't think i'd want to go much stronger unless i really had to. it's been a little rough since i hit the max on sun.. the heat has definitely been a factor, hi90's-low100's here in sunny so. cal.. i've noticed a peak weak time around 3-4 p.m. and am scheduling that time slot for nap/rest. evenings have been the most productive. mornings suck. too many meds to get down and acclimate to. midday in summer is mainly for indoor work. way too hot. small jobs are ok, prolonged exposure is NOT.
next neuro appt. is the 25th, unless i have a major problem. i'll know more about the long term therapy plan then. he was waiting to see how i tolerated the steroids and that couldn't be rushed.
in the big picture i feel all is going relatively well. my symptoms are well controlled with the mestinon. i'm alert for changes for the worse and haven't noticed any. i do agree 100%, the unprdictability is difficult to deal with. i've resigned myself to the fact that i have to take as much down time as my body requires. the only drastic change i've made is not scheduling any early morning work or appointments. thanks for the input. i do plan on discussing alternatives to steroids with my neuro. it may end up being a money thing also. i am paying real money for all this. the only real biggy there so far was the blood work, $700. i will need a CAT scan in the not too distant future to rule out thymoma. that will probably run $700-800.