I have had MMN with CB since 2000. Left arm and hand weakness and tremors. Symtoms began in 2000 and diagnosed in 2001 ( first diagnosis was Motor nuerone), began treatment with Ivig (Intragam) 150gms at three monthly intervals, this treatment increased strenth levels in the short term. Over the years the time between Ivig infusions has been decreased. Now recieving 90gms every 5 weeks. My self testing is to do a bicep curl with a 1 kg weight and record the number of times that I can lift it. At the start my peak was 30 times now my peak is 9 times, so the effectiveness of the Ivig is decreasing. These records have all been charted and the Drs love it.
In October 2007 I was treated with Rituximab, this increased my strength level (16 lifts) but only last for two months then back to previous levels. In Dec 2008 I commenced a six month course (1 per month) with cyclophosphamide, I have had two doses as well as continuing the usual Ivig. Small improvement after the first treatment, still waiting for the second to kick in.
has anyone else been down this path and is it worth it.