Dear Meltrey, My name is "Joujou" and I was diagnosed with SPS in 6/2011.
I was immediately started on IVIG, 90 gm/month, 3 days per week. I was diagnosed in Jacksonville, FL, but diagnosis was confirmed by Dr. Jankovic at Baylor Medical Center. After 9 months, IVIG was discontinued. I have also had type 1 diabetes for 30 years and been on the insulin pump for 26 years. Currently I am on 60 mg of valium and 30 mg of baclofen per day. I am in excrutiating pain every day and am rapidly progressing. I also have severe short term memory loss and use the incorrect words out of context.
I would appreciate any help that you can provide. I just joined Neuro Talk today.