I can get my eye to go off any time I blink too hard or sneeze...but overall they have decreased with time. I started back in Jan with just the index finger, then all over my body...legs...arms...back...face...eyes ...feet...stomach. I was a mess...jelly legs, couldn't lift my left arm for more than a few seconds without it getting tired...cramping both feet...both hands...sometimes my arms. My partner is a neuro and told me to chill out my exam was normal. I didn't believe him, got a second opinion from a neurologist who did nerve conduction and EMG (normal) and basically told me the same thing. Since then I have slowly gotten better. I would say I twitch 10-20 times a day that I notice...now. But, it was much worse. The cramping comes and goes but is better as well. I started weight lifting again...and have put on muscle and gained strength.
It was a bad cycle...even though I'm a physician I knew only the bare basics about the disease that won't be named. How I was trained was that if twitching is isolated...no atrophy, no weakness...normal neuro exam...don't pursue. If one of those is abnormal refer to a neurologist. But, as I read more and familiarized myself with a rare disorder everything got worse until I found BFS...which honestly I had never heard of. The self testing, lack of sleep, 24/7 anxiety just made everything worse until the cycle was broken. I'm on the mend...not completely better...still not completely convinced...but better.