My husband has it. He stareted symptoms around 1999 but it took until 2001 to find out what was going on. He received IVIG for about 2-3 years. He believes it did not help but it did stop the progression. The IVIG was not easy, it makes you feel bad for awhile and just when you do start feeling better it is time for another dose. Some brands of IVIG seem to be worse then others. My husband stopped the IVIG because of money issues. His job changed insurance and the new insurance would not cover it all. It was costing us $1000 every 4 weeks. It cost around $7000. I had to fight very hard to get our 1st insurance to cover it it( took me 4 months and hrs. of phone calls). He seems to be holding well without the IVIG now. He still has lots of tremors, drop foot, and his fine motor skills are not great, but the IVIG did stop it. Good luck.

HI Doug, Cnt offer any help at the moment but I am in the same situation as you and start my Iv treatment next week for five days. My condition began in my left leg but has now spread to both legs and my left arm. Still mobile but stairs are difficult and walking laboured. Hoping for an improvement after the treatment. Hope you get your treatment soon and please let me know how you go on.
Regards
Jim
Gilman UK

Hello all. My husband has had two treatments of the IVIG without any improvement. In fact he continues to get worse. Has anyone NOT responded to IVIG treatment, but responded to another form of treatment? With no response, I am wondering if he has MMN or something else...the worst case being ALS. He has no symptoms with his mouth...all is well. Please give me your feedback. Also...anyone with MMN that got so bad you had to be in a wheelchair? Karin

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 Bravehearto7,

I was just checking in to see the newest on NeuroTalk and saw your post and how many people have replied or just read it. I guess this shows an interest bigger than I thought. I was diagnosed at Mayo Clinic in MN
in 2006. I figure I've have had MMN w Conduction Block since about 2000. I am in Michigan. I have weakness in both hands (started in the right) and left leg and foot. I have IVIG every other week -30mg- and think it is at least keeping things in check. Everything seemed to take a long time...to get diagnosed...to get insurance okay.....this is the first year that I have had the ok to have treatment every other week...etc. I welcome any questions, thoughts, feelings.
I am so glad that you posted your message!!!
Christine

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

I was diagnosed two years ago finally with MMN WITH CONDUCTION BLOCK by a neurologist in Chicago at Northwestern. Supposedly I no longer have the conduction block which is unusual. I have been taking weekly IVIG treatments for the above length of time....I tried giong every other week for 6weeks but noticed the return of weakness. I will be seeing my oncologist in a couple of weeks. My labs show a M spike along with other IgG and IgA, etc abnormalities and I'm beginning to think I am dealing with two different problems being treated by the IVIG. She has ordered MRI scans of chest, abdomen and pelvis. I think she is looking for lesions that may suggest meyeloma. I was seen by a specialist at John Hopkins a year ago and he diagnosed me with IgM paraprotein which features include predominantly large fiber neuropathy again consistent with longstanding IgM gammopathies. My insurance company has covered these very expensive treatments of IvIG this entire time other than my deductible but I'm very concerned they are going to refuse to pay them as IvIG is not a cure for MMN.

I'm on a trial of IVIg for a tentative MMN diagnosis. Lost functionality in left hand before treatment--no extension in thumb or index finger, plus my wrist is starting to feel funky. So far (after 3 monthly treatments) I only see a reduction in fasciculations and cramps, everywhere except my left arm & hand. Can it take a long time for improvement? Do these minor symptoms typically respond first?

**

I'm curious about the same thing. My husband was diagnosed with MMN in February of 2010. He started receiving IVIG in May (after battling it out with the insurance company) and now, after 4 treatments, the weakness seems to be getting worse, although his cramps and twitching are WAY down all over his body. I'm hoping this is just the way the process works. Anyone have any firsthand knowledge of this?

I have been on ivig every other week since January 2010. I am noticing less cramping but the weakness seems to have started increasing. This is the first time I have read about it in posts and I thought..wow...is this happening to others or have I just missed it before now?...