Originally Posted by ramcatluvr (Post 517111)

Thanks so much for your information on the different websites. So far I've been doing my own research (to my hubby's chagrin) to try to find out what the heck is going on with my body. Had symptoms since Dec 08 and finally getting to the point with doctors that hopefully, I will be diagnosed within this coming month of June. CIDP was ruled out already along with MS and LUPUS,etc. Very good neurologist did all the tests thinking I had CIDP and surprised himself when the tests came back negative for it. He has referred me on to a different type of neurologist now when he said I might have MMN. I have seem to come down to either MMN or possible ALS. Doctors don't seem to want to help much and was having insurance problems with the referrals to more major doctors. I think I'm finally over it. My problems started in my legs, which seems to be sort of unusual. Most people seem to have it start in their hands. Anyway, thanks for all of the different info. -B

Originally Posted by Braveheart07 (Post 213119)

Hi,

I am new to this post----just wondering if anyone has had experience with Multifocal Motor Neuropathy with Conduction Block and what has worked for you. I am scheduled to receive IVIG therapy soon, and am curious about that as well.....Any info. would be greatly appreciated..
Thanks !! Doug

Originally Posted by rbpug (Post 529110)

Doug, I've had MMN since 1995, and have been on IVIG since 1997. I'm still working full time and living a fairly normal life. I was an active marathon runner when I was diagnosed so I have given some things up. I recieve a "treatment" every 12 weeks and this is crucial to my well being. As a veteran of this therapy, I would be happy to answer any questions you might have.

Originally Posted by di2005 (Post 543119)

Hi, I am interested in the fact you have been taking treatments for several years-I think that is what I am facing too. Do you still have to have the EEG's occasionaly? I feel they are so barbaric and just plain horrible to go through. Do you take any other treatments with the ivig? I was diagnosed about three years ago and most of my trouble is in my legs. I need braces for foot drop so I can walk using a walker. My upper body so far is okay, however I broke my leg a month ago, so now I am looking at a bunch of therepy to keep what strenght I have left. Any information would be appreciated. Di

Originally Posted by nate (Post 564390)

I have MMN. I first experienced symptoms almost 20 years ago. They were so mild I did not act upon them at first. When I did it took several attempts and multiple doctors to get a diagnosis. I start IVIG on Sept 14 2009. Anyone had luck with Rituximab? My symptoms seem to be progressing more quickly now with the jerks getting worse but I have not had cramps yet.

I live in Dallas and am looking for a support group or even one other person to talk to.

Nate

Originally Posted by SamS (Post 599551)

I also have MMN. officailly diagnosed last year after initially being diagnosed with MND (ALS). I've had 2 bouts of IVIG which has had some positive effects. Given me a little strength back last one was sep 2009 so i'm ready for another session.

Would love to here from others and their experiences of the disease. Also what other treatments are out there

Originally Posted by nate (Post 564390)

I have MMN. I first experienced symptoms almost 20 years ago. They were so mild I did not act upon them at first. When I did it took several attempts and multiple doctors to get a diagnosis. I start IVIG on Sept 14 2009. Anyone had luck with Rituximab? My symptoms seem to be progressing more quickly now with the jerks getting worse but I have not had cramps yet.

I live in Dallas and am looking for a support group or even one other person to talk to.

Nate