MADSAM Neuropathy

Hello all,
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.

Hi Susie,
Yes, I read everything on the NIH site. It’s a variable dosing schedule. Loading dose was 5 days in a row. Gen every 2 weeks, then once a month. And eventually less than that. It works for 7-8 years, which should buy me some time until something new comes along. Main issue for pain is the muscle spasms. Sometimes they are so bad they cause my whole leg to get covered in bruises in a matter of an hour or two. I’m really hoping this next brand of IVIg works because some days I can’t even stand because my leg gets contorted in a weird position. I do start with a new PM on the 31st who is an expert at SCSs— and all that can go wrong with them. So maybe he’ll be some help.

At least now I have a definitive diagnosis so I don’t have to deal with the nonsense of my pain & weakness being blamed on rebound pain or psych problems. My scans were all basically normal (except for scarring from infection along old SCS tract), but the EMG & NCV clearly showed nerve damage.