I became ill over 10 years ago but didn't get a diagnosis until 5 years after that. I've never been in crisis enough for a respirator, thank God, but I've been hospitalized 3 or 4 times because my breathing was tanking. Luckily I've got a neuro that listens and gets me into the hospital quickly for a few days of IVIG if I need it. I'm on mestinon and Cellcept, and I get IVIG every 4 weeks. I'm still working, but I am blessed with a very supportive husband and daughter. They have taken over the house. No real eyesight problems except some blurriness in the evenings. Lots of arm and leg weakness. Definite breathing problems, my voice gets raspy easily, and choking is an occasional issue. I've learned what I can manage and what I can't pretty much.
My mom said forever that I "looked fine" and nothing was probably wrong. I hate hearing how good I look...I have gained about 40 pounds thanks to this stupid disease.
Well, that's my venting for the day...