CA-Mom,

My daughter’s illness started in the fall of 2005. It has been really hard to pinpoint when hers started because she was very active in Color Guard and Winter Guard in High School. Hers seemed to start with pain in her toes and then the pain traveled up into her calves. By fall of 2005 she started falling during her Color Guard performances and then finally she told me that she was having trouble buttoning her jeans. They first diagnosed her with CMT, but the tests came back negative and we did not have any family history. We went to Mayo in 2006 and that is when she was diagnosed with CIDP and started on the IVIG. A year later they added Cellcept. We are now at the two year mark with medication and she has not gotten any better, but also not any worse. She has worn AFOs since January of 2006. Her neurologist is now sending her back to the Mayo Clinic to see if they need to change her diagnosis. Her symptoms have been all strength related with no numbness. From pretty much the beginning this has affected her from her knees down and her elbows down. It all seemed to happen in a short time frame and it has remained stable.

You son sounds just like my 19 year old daughter. Her feet, lower legs, hands and lower arms are the only things affected. Hers is also weakness with no numbness. Her illness also started the same way and we think it followed an illness. She gets IVIG weekly and is also on Cellcept. She has not gotten better, but has not gotten any worse. We go back to the Mayo Clinic in July.