I'm the newest member and, alas, no one has posted anything since I joined. Is everyone doing poorly or perhaps too well (hoping it's the latter)? My PPMS recently became very active again, after being on the "mystery plateau" we all speak of, and now I am experiencing extreme fatigue in the afternoons. I'm almost 19 years into this disease and hadn't been hit like this until now. I tried Provigil for several months and felt as if I wanted to leap out of my skin and scream 24 hrs a day. Same thing happened when I tried Neudextra for PBA (pseudo bulbar affect.) So, it is plainly obvious that stimulants are NOT for me! Guess it's a good thing I never took up drinking coffee or tea (never liked the taste, believe it or not.) So, every afternoon around 3PM; no matter what I am doing; my head falls forward and I am asleep just-like-that. If I fight it and fight it I can stay awake, but then I pay a very heavy price a few hours later - I have NO strength at all and cannot move my one good appendage (right arm) which means I cannot feed myself/eat dinner.
I really hope someone will answer/chat with me. Pretty please?