I have SMA just diagnosed after 5 yrs. throwing up blood n bile n I am being told to gain weight n then its possible exploratory surgery. Im glad to have a diagnosis but when i get attacks i was done for 21 days throwing up blood n bile couldnt stand or sit up n i lost 15lbs in like 4 days. I wish someone would now two months later, step in and get going on surgery. My entire family thought i was going to die while i was screaming n crying. My children have watched me sick for over five yrs and i dont know if ill survive another attack. Im nervous everytime i eat and I know my body cant take no more. Sitting hunched over with a twice over broken tailbone and saccrum and one time broken neck is not ideal. I’m 24/7 in pain horribly to the point of crying constantly. Just wish some dr. would help me.