NeuroTalk Support Groups

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- - MMN with CB (https://www.neurotalk.org/neuromuscular/111240-mmn-cb.html)

Hey Twitchfly
As it happens I am seeing my Dr tomorrow Friday March 24th, would you like me to find out the IVIG product and dosage I am currently getting. What surprised me was not all products for the IVIG are the same; some work better than others. I am on a study now for FDA approval of IVIG as a treatment for MMN and the stuff I'm using now is more effective than what I got prior to the study.

If you interested let me know.
Ed

Quote:

Originally Posted by Edfe (Post 755651)

Totally! Yes, thank you. I didn't qualify for any studies because they can't document an actual conduction block, which is interesting because the newer research I read about defining MMN is starting to tend toward not caring much about actually documenting a conduction block.

IVIG treatment for MMN

Quote:

Originally Posted by Kelly in Oklahoma (Post 604165)

I've been diagnosed with MMN w/ CB and finished Round #1 of IVIg treatments (5 treatments in a week). I've already noticed improvement. I'm wondering if others with MMN that have had IVIg treatments for years have regressed back over time or if some have maintained the same level of initial improvement. I'm curious about what to expect down the road. Thanks for any thoughts & info.

Kelly,

From what I know about IVIG and MMN you could be looking forward to years of good health as I did (14), and that was after having MMN for 13 years before being treated. Some friends who were diagnosed and treated early needed only occasional infusions to maintain their levels.

There was gradual weakening over the years in my case, not painful, just annoying foot and wrist drop - to the point where now IVIG has ceased to work -but not complaining! Am looking for alternatives. Be glad to answer any further questions about my experience with MMN and IVIG. Best of luck. Chris

Quote:

Originally Posted by ChrisSabin (Post 796298)

For myself, I don't know if the IVIg is helping or not. Been on it for 15 months.

Being unable to find an online support group dedicated to MMN, last weekend I set up a forum just for us at http://www.mmnforum.com/forum

One of the categories is Alternative Treatments, which I am also looking into. I hope fellow MMN patients will take a look and share their experiences.