Reply To: New to this…..

August 2, 2006 at 2:58 pm

Dear Rose,

Okay, I am new to this discussion board too. My experience seems to match your brothers to some degree. I came down with GBS in Singapore while traveling on business. Was diagnosed very quickly by a neurologist using nerve conduction tests. I entered the hospital and was given 7 days of IVIG. We believed I had reached a plateau and decided I could travel home. At that time I was mobile with a walker and very limited upper body involvement.
The travel home took a significant toll and I went further down upon my return. I met with a neurologist locally and he felt the treatment in Singapore was appropirate and we decided to just watch my progress for a couple of days. Unfortunately, I continued downhill and ended up with no control over my legs. We then initiated plasmapheresis and had a series of 5 treatments. I saw improvement after the third treatment and continued to improve over the next several days and could again move with a walker. Thought things were on the right path. However, I went backwards again, not as far this time, and plasmapheresis was started again. I did four treatments in-patient and then started outpatient plasmapheresis. Am now on a cycle of every other week. Am also taking Imuran.
Based on my experience I would try to initiate plasmapheresis as soon as possible. It was a significant step forward in my recover and each time I saw major improvement after the in-patient stays.

Good Luck and God Bless