I agree about the edema...I definately think that there's something else going on. It tends to be worse in the morning and after standing for prolonged periods of time, so I was thinking that it might have to do with my overall posture.

I did go for some EMG testing on my hands, though. The neuro. stuck a needle in my forewarm, and had me bend my wrist so that my fingers pointed upward. He said that the nerve is not meeting the muscle, or barely is. He said that's very unusual for MG, and that he would send the report to my MG specialist. I haven't heard back. I also have a lot of tremors in that hand in my index and middle finger, with ocassional stiffness. It's making me very nervous. He said that the muscle is big, though. He also said that the nerve is normal, but they're just not meeting.

On another note, I completely agree with you about strengthening the core muscles. I'm planning on starting swimming. It's going to be really hard- my muscles are so not in shape- but i think it'll also help with aligning my spine and alleviating the pain. I figure I'm mainly in pain because my spine is carrying so much 'dead' weight.

Hey Erin,

Thanks for the kind words! that's great that you got the massage- the people there sound so nice! Have they figured out why the edema is so bad? It sucks, eh? I don't have it in my ankles so much as my hands. Just touching my fingers will leave a mild dent, it's so bad....The massage seriously helped, though...The sternotomy left me with a lot of stiffness, and my shoulders were forever painfully drooping forward. I'm trying my best to sit up straight, but every once in a while, I find myself leaning forward in that really bad position. Bad habits plus weakness!

I hope that you're feeling better soon, girl!
Nicky