Suzanne, I also have stiff persons syndrome. I was just diagnosed last summer. I don’t have it too bad as it just occasionally effects my left leg and mid-section to where I stiffen up. I am now taking medicine for that but I also tried IVIG and I don’t think it helped. My biggest problem is I can’t walk through parking lots, or even walk outside without some kind of assistance and I get kind of dizzy and scared. I also tend to have a problem when walking in front of other people unless I have my cane or walker with me. I didn’t know if this disease tends to get worse or not. I do much better in the summer it seems than in the winter. I just can’t even walk down the sidewalk on my own, however I can walk in my own home and my office without any assistance. Makes no sense to me. I am on an anti-anxiety drug but it doesn’t seem to help this part of it. I guess I’m lucky as I don’t have pain.