I have MMN and have minimal use of my left hand. I am showing signs of atrophy and am experiencing painful cramps in my left hand and left leg. The doctor suggested IVIG treatment which I am scheduled to receive in the next few weeks.

Please keep us posted Braveheart07...I hope everything works out for you.

Thanks to all who responded---
dahlek--WOW that's alot of helpful info.--thanks so much---I have been on another board, and doing tons of research, and sort of forgot about my thread here--sorry for the delay--- I have been through 2 rounds of IV therapy ( 4 days 3 weeks apart)--and so far I haven't noticed any difference...I really thought I would by now--I have one more round to go in 3 weeks--we'll see what happens---I'm looking into possible Lyme disease--my symptoms seem to indicate it's possibility--Have an appt with a LLMD on 4/2--I will take everyone suggestions here--Thank-you so much for them-- Ihope you all are doing well and have a great Easter, and SPRING !!--Doug

I was diagnosed with MMN a few years ago - initially just some minor weakness in my right hand. Gotta say my consultant wasn't really very helpful, but after a little research of my own, I decided that I'd prefer not to seek treatment. My main reason (apart from avoiding blood borne infections - i am a bit paranoid ) was that I read that IVIG treatment only worked for a few years, then it all started to go downhill again. I figured that it would be better to wait until (if) my symptoms got serious before treatment, as that would be when I'd really need an effective treatment.

Now I have another symptom (weak calf) and have done a little more research, I am beginning to wonder if I made the right choice. Wondering about the opinions of anyone who has taken the treatment, and those who have not.

Also, how does insurance typically take to IVIG for MMN? Will it pay for the whole treatment, or is it out of your own pocket?

I was also diagnosed with Multifocal Motor Neuropathy, My insurance paid 100 % when i was receiving the treatment in a doctors office. Now im receiving it in the hospital ( Outpatient) and i now i have to pay 10% after what the insurance has paid. Are you on disability ? If not you might want to look into that. Im on social security and im 25 and it pays alot better than i thought. Also i think you made the wrong choice about putting off the treatments when your symptoms started showing, reason being said is that i did the same thing and the worst mistake i ever made because i was a week or two from being on my death bed. I am also taking IVIG once every 2 weeks, and on Rituximab ( chemotherapy) very good treatment, a month or so after my first treatment of Rituximab I've started to regain some strength and walking a little bit better. On the Rituximab treatment they have me setup a treatment every 10 weeks for 2 years. Really the best medicine for this disorder is to keep high spirits, keep a good attitude as much as possible, and stay as active as you can ( whatever your body will allow ).

God Bless Everyone and their families that have been affected.
Good Luck,

Steven

I have had MMN with CB since 2000. Left arm and hand weakness and tremors. Symtoms began in 2000 and diagnosed in 2001 ( first diagnosis was Motor nuerone), began treatment with Ivig (Intragam) 150gms at three monthly intervals, this treatment increased strenth levels in the short term. Over the years the time between Ivig infusions has been decreased. Now recieving 90gms every 5 weeks. My self testing is to do a bicep curl with a 1 kg weight and record the number of times that I can lift it. At the start my peak was 30 times now my peak is 9 times, so the effectiveness of the Ivig is decreasing. These records have all been charted and the Drs love it.
In October 2007 I was treated with Rituximab, this increased my strength level (16 lifts) but only last for two months then back to previous levels. In Dec 2008 I commenced a six month course (1 per month) with cyclophosphamide, I have had two doses as well as continuing the usual Ivig. Small improvement after the first treatment, still waiting for the second to kick in.
has anyone else been down this path and is it worth it.

Hi sorry to bother you but I am new to this site and cant seem to find how to post a messege from scratch. Maybe I am not looking in the right place but would be grateful for any help.

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I am awaiting a diagnosis of either MMN or ALS and my referring physician seems to think the treatment of choice would be IVIG if it's MMN. I was hesitating as to whether or not I wanted to go this route or find some type of natural (herbal/physical) therapy instead. I think with everything I've read here and other places on this site my best bet would be to go with the IVIG. Thanks for helping me make this decision prior to the diagnosis. It has helped clear some of the brain fog I've been experiencing lately. -B

I have just been diagnosed with MMN myself. I'm only 23 years old and I've been having weakness in my left leg. I can't get up, walk, stand for long periods or climb stairs. I've found out that its now in both legs and both arms. I was told that i had a viral infection and my white blood cells attacked the virus then saw my nerves as a threat and attacked them as well. I also suffer with drop foot syndrome. I'm very miserable and my knees keep giving out on me. When I fall i can't get myself up someone has to literally pick me up. I was suppose to go see another Dr. to get a second opinion,but they can't fit me in. I believe that i'm having the iv treatment done thursday. I'm very scared and nervous. I want to be cured so i can pick up my son and run after him. Can anyone tell me what i should expect from the treatment?

I'm sorry to hear that you are going through this. But let me tell you something that has kept me going each and everyday. That's keeping your spirits up and having a good attitude on the situation that's going on. I know it's hard, I know. I'm truly sorry we're all going through this horrible disorder. As for the treatments go. They are great. they've worked for me very well. I'm also on chemotherapy treatment called Rituximab. This did not make me sick at all,or lose any hair of that matter. I've only had one treatment of that so far. I've been diagnosed with this for almost 2 years now,so I know exactly what you are going through. Best of luck. Will keep you and your family in my prayers.

Steven