Originally Posted by PhyllisTx
Hi. Does anyone here have MADSAM? It's related to CIPD and GBS. I currently get an IVIG infusion every month. I was using a cane prior to the IVIG. Anyone with the disease or information would be greatly appreciated. Thanks.
Hi Phyllis! I have MADSAM Polyneuropathy. I was hoping there would be someone whose symptoms/treatment I could relate. I was diagnosed in January of this year, after a two week stay in the hospital. Such burning and tingling and buzzing..and especially weakness in my arms and legs. I couldn't walk by myself even after I got home. Thank goodness my sister decided to stay with me for ten days. Started out with IVIg- 5 day course. Helped me a little but not significantly. A month later I had a 2-Day course of the IVIg. Followed up with my Neurologist a few weeks after. To make a long story short, nothing has really helped the weakness. I'm really tired all the time, but can't go to sleep until 2 or 3AM because of the 60 mg of Prednisone daily. I've been on this evil/miracle drug for 4 weeks now..and again the weakness is still present, and the tingles/pins and needles have come back. It could be much worse, but I become discouraged when I don't see/feel progress. Just returned from seeing my doctor again. I'm to stay on the Prednisone and receive the infusions, as well. He said sometimes the pred takes 3-6 months to really kick in. I am much worse in the evening and at night. You? And, when I do a lot during the day, I'm weaker still later. Such a strange disease this is. I'm happy to meet you.