I'm still on IVIG to keep me steady, but i am also in Rituximab which is a chemotherapy and has done wonders for me. I started this treatment in December of 2008 and could not lift myself up on my toes, now i can. As well as run and not be to exhausted like i used to. The only muscles im still having some trouble with are my finger and wrist extensions and my anterior tibialis muscle (shin bone muscle ) which causes foot drop. I would ask your doctor about rituximab treatments. I also had it so bad to where i had to walk with i cane, and i'm 26 and a former firefighter. So , I know what you and your husband are going through.

Best Wishes,

Steven

Hi Steven,
Glad to hear that you are on the upswing! That's great news.
I wonder if you might be willing to elaborate a bit more on your Rituximab treatment. I'm especially curious about timelines before you noticed improvements and how obvious (or subtle) these improvements were AND how great they were. As well, what side effects did you experience and how often are you getting the Rituxamib? While I recognize that everyone's treatment and reaction to the treatment is different it's always good to hear success stories. I, too, have MMN, diagnosed just over a year ago when I could suddenly (over a matter of a few months) no longer walk unaided nor write or type without support. I originally had left foot drop and right wrist drop but this has now spread to both legs and both arms ( I can't stand on my toes either and am intrigued by the amount of strength you were able to regain). I started IVIg treatments last July bit did not respond as well as the neuro wanted. We upped the dose with no significant improvement. We then started cyclophosphamide treatments for 5 months but that did nothing more than make me ill. This March we began Rituxamib treatments; every 10 - 12 weeks. I've had two sets and contine to get IVIG every 3 weeks. I still walk with a cane on the better days and need a walker on the harder days and thus far there have been no noticeable changes, but I'm hopeful. Consequently I'm interested in your experiences, if you'd be willing to share. You can contact me via this post or privately through my posted email account.
Thanks
Keith