i know EXACTLY what you mean Abby. i am having the beginnings of a crisis right now. the doc reduced my IVIG from 5 to 3 days because i have been doing so well but he also has been reducing my prednisone in preparation for my thymectomy and i am currently going by 5's and am at 10. i started with hand weakness and leg weakness and shortness of breath. he had to get me into ivig urgently--in under 24 hours. today will be day 3 and i am starting to do a bit better already thank goodness.

the situation started with my legs feeling wobbly and like i might fall when i went down the stairs. when my husband checked them with a straight leg raise from the couch, there was zero resistance. they felt like they had 40 lb weights attached and they were just totally gone. in the past, when i have problems walking, my knees just give out and i start to fall, no warning and no sense there is any weakness or fatigue at all.

my neuro was stunned by my weakness. he checked all the muscles in my fingers with his 3 residents there watching how to do all this and i just had no strength. again, no sense that there was a problem. the only way i knew was that i couldn't open a bottle with a pull tab that day but i had the day before.

in regards to the prednisone, my doc wanted me off for surgery but my MG turned on a dime so now he thinks i need to get in ASAP as soon as i'm strong enough. the surgeon said she'd operate on 10 or less and he is bumping up my ivig to hopefully cover me. i finish ivig on the 5th and start again on the 12th for 5 more days!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!


debra