Comment by cstaszak

I was extremely lucky and the gap between first physically detectable symptoms (faciobrachial dystonia (face), arm twitches) and initial treatment was only a week. My initial treatment was a hero dose of IV steroids (as you know to shut down the immune system) and plasmapheresis (filtering antibodies from my blood). I had a relapse ~5 months later, resulting in another (shorter) hospitalization where more steroids and IVIG came into the mix. I received Rituximab and IVIG infusions every six months for first two years. I was also on anti-seizure meds for most of this until cleared by an EEG. My infusion schedule is now being dictated by B-cell labs - they've been so low that I haven't needed any (yet). I've also been doing the periodic rounds with CT and other scans to make sure that if cancer is the cause of my AE, we can find it early and deal with it. Feel free to hit me up at my username at gmail if you'd like to talk further.