June 22, 2007 at 6:42 pm

I gave myself time to think this over because I wanted to make sure I’d respond in the right way since I am one of the members who no longer needs treatments or steROIDS. First, steroids can be difficult to come off, it has to be done very very very slowly, especially if you’re on a high dosage. It took me one failed attempt and then one year to get off them. Like everyone else, hated what they did to me, I actually felt like I had a Jeckell (sp?)/Hyde personality. But, for me, if I needed them, I would have stayed on them.

You said you experience declining weakness, so rather then listening to your doctor or confusion, the weakness indicates that you still need IVIG’s. For more then a year, my doctor would always ask me how I feel and my answer was always “the same”, no sign of getting weaker, no sign of losing strength. I’d continually maintain my abilities. I remained stable for more then a year before I even talked to my doctor about ending the IVIG’s.

I have a very slight drop foot in my left foot, but I never dragged the foot or tripped over them. I considered trying AFO’s, but chose not to do that because I do very well with sturdy ankle high boots.