Posted 9/30/2018 3:42 PM (GMT -7)
It's been a while since I've been on here. I have been to a number of neurologists because they had thought I had arachnoiditis, but now have instead found that I have MADSAM (multifocal acquired demylinating sensory & motor neuropathy) -- almost certainly from the SCS implant that I had get infected.
I got the first round of IVIg & it was amazing... except for the fact it gave me aseptic meningitis. We switched brands for the second round, but it did nothing at all. So now we're looking at round #3.
Since this is a rare disease, my neurologist has never worked with a MADSAM patient before. It's a variant of, or a cousin of (depending on which journal you believe), CIDP, which my neuro has seen before, but it seems like the nurse at the infusion unit knows more about MADSAM and IVIg than my neuro does.
Does anybody have any experience with this horrible disease? It really does seem like IVIg is my best bet. It could allow me to keep walking for another 7-8 years! I'm just trying to figure out what my next step needs to be. Any experiences or information that you all can share would be greatly appreciated.