I used to do the exact same thing as you Joanmarie, go to the Drs fully doped up on the mestinon after having rested for a few days. Only for them to never understand how ill or weak I actually am.

Now when I go I make sure that I do all the things (limited as that is) that I would normally do and sometimes I dont take the mestinon for a couple of days just to amplify the effect.

The other thing that gets my goat about this illness are the comments "but you dont look sick" or "you look really well" when inside you feel like curling up in a ball somewhere discreet and just dying!

However the thing is now I am starting to look sick! Is that a good thing? Who knows?

Oh and while we are here.....going to vent! have you noticed or maybe its just me. When Neuro's test your strength they do it once! This is a fatiguable illness so surely some common sense could be applied. Of course my strength can be fine if you do the test once, try getting me to do it 3 or 4 times! (big slap on forehead).

Anyway thats me done!
Love
Rach