Originally Posted by Geode
I would also like to know if the type of extreme fluctuation Abby is experiencing is typical of MG.
Tatia, I think of you often. I've seen your video documentation of your episodes. Mine are not nearly that extreme, but I do have 45-minute "spells." Usually I can feel them coming on. In the middle of a severe one, I can't walk or stand, and sometimes I can't even sit in a kitchen chair (I need to lean).
But these "spells" happen against a background of more typical MG-like symptoms. On a typical day, I feel like I have MG all day long. On a good day, I might feel almost normal at any given moment, but if I do anything with my muscles (even like blow-drying my hair) they fatigue, and by the end of the day it's worse.
I have tried to correlate my spells with what and when I eat, but food seems to have nothing to do with it.
Bottom line: my weak spells are not usually anywhere as severe as yours. And I could never go 30 minutes on a treadmill even on my strongest days. I know you are familiar with the different kinds of periodic paralysis, and I know you've even had some testing for them--but I don't understand why one of those diagnoses isn't more of a possibility for you.
Thanks for the input about the wheelchair. My husband has put foot rests onto my walker (yes, against the sensible and kind advice of 4-eyes!). This makes sense for me, because I need to be pushed in it very rarely, and then it's only for, you know, 20 or 30 feet. For me, it's a choice between using a walker as a wheelchair, or a wheelchair as a walker. And since 95% of the time it's a walker I need, I choose the walker. I also have my rickshaw for longer walks, which is more comfortable than a wheelchair because it's made of a reclining lawn chair, so I don't have to hold my upper body vertical. You have to understand that my husband and I are dyed-in-the-wool jimmy-riggers. This is how we live. A walker rigged to serve as a wheelchair if I get caught weak and away from the car might sound like it's not ideal, but for us it's sort of a way of life. Think of it as cultural.