I have CIDP [chronic inflammatory demeyelinating polyneuropathy] a relative of MMN. Only, my own issues affect primarily the sensory nerves. Either way, we don't seem to be working very well, do we?
Background is needed, and Sam, both you and nitro need to post more often so you can receive PM's with VERY specific info on very specific sites that might be useful... Since I can't post support group forum references here I can only refer you to background and sources which mite have what you need.
Background: These are up in the 'stickies' somewhere but read these to get the picture as to what all goes into diagnosis and then the options there are for treatments.
http://neuromuscular.wustl.edu/alfindex.htm Read about lab tests http://neuromuscular.wustl.edu/lab/nvworkup.htm#lab and then scroll down to Multifocal Musc. Neuro... http://neuromuscular.wustl.edu/antib...imdem.html#mmn
Then web up these put together by members of this group in the past....
http://www.lizajane.org/
Lastly is the following about the various diagnoses we all can get and the treatment options available to us. http://www.aafp.org/afp/980215ap/poncelet.html
That all said, I've met many folks in doc's offices and in infusion clinics who receive IVIG as a therapy..... My take on many folks I've met who have MMN receiving IG therapies is that the benefits far outweigh the costs financially [and ANY insurances here are critical] and side effect wise. All were successful beneficiaries of IVIG. A good source about IVIG is: http://www.igliving.com/ There are lots of different folks getting this stuff and it helps them! Subscribe to their 'e-zene' it's free and no junk mail? And you can look at all their back issues...they are also good with bunches of good resources and helping to get the 'stuff' as I call it.
Yes Plasmapheresis works for some, but an equal % benefit only from the IVIG and others don't benefit at all. [Please note that both PP {plasmapheresis as it's referred to} and IVIG are both considered 'invasive' procedures, so read carefully and learn about them thoroughly]
Enough for starters, so read, learn, and you will likely have questions! No question is too silly! Besides, this stuff we didn't ask for, so we gotta find ways to deal with it! Post! Please! - j