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 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

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

I was diagnosed over 4 yrs ago. The doctor said wait and see what happens. 2 years later I got a 2nd opionion alot more testing and MMN was again confirmed. Now a year and a half after IVIG not much relief. I am exhausted all the time. So tired some days I can hardly function. Since I run 12 heavy machines at work my neurologist wants me to go out on permanent disabiity. I'm nervous about going out. I am 56 years old and worried I wont be approved,then I have lost my job and insurance. Has anyone with MMN gone out on total disability.SSI?Does anyone have any suggestions? Doctor is afraid since I have loss strength my job could be dangerous. Hope to hear from anyone out there that might be going thru the same delemia.!!

If after a year and a half of no improvement on IVIG there should be escalation of therapy to another modality, ie. Rituximab, Cytoxan.

Hi, poppyjohn,

I filed for disability, as I too have multi-focal motor neuropathy.
I was not awarded any money from my claim, but was given access
to medicare early - as no insurance company will even touch me, unless
it is through a work group.

Hi, I was dx with ALS/possible MMN a month ago. No insurance. Trying to arrange things. I am wondering, have any of you tried tumeric, Vit D3, or other unconventional therapies? Also, before you got symptoms, did you hit your head really hard? Doc said that probably didn't matter, but I am curious. I have had slow wasting of my left hand and arm, now it's moving into my right arm and leg. I cannot use my left arm or hand for much of anything now. No pain. I guess I'm looking for an alternative to IVIG, hate needles. Thanks for having this forum, it is very helpful to read what others are going thru.