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

You might want to talk to your doctor about Rituxan (Chemotherapy) it has done wonders for me in a matter of 10 months, I noticed HUGE improvements of strength and stamina with this treatment. While im taking Rituxan i still take IVIG treatments.

Best of Luck

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?

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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?...

Hello Christine,
I have been diagnosed with MMN Jan. 2010. The doctor also gave me IVIG and after the first dose, (of two.) I got AMS, (Aseptic Meningitis Syndrome.) 4 month later, the doctor suggested a different brand of IVIG, given over 5 days, 20% each day. After the 3rd dose, I got AMS again.
A different doctor, advised by my first neurologist, prescribed, Hizentra, given subcutaneously, at home.

I started, 7 days of 3 grams, (15ml) 2x a day, the first week, then 2x a day, twice a week. I did we'll on it, but after 8 month the doctor up't the Hizentra to twice a day, 3x a week. And since October of 2012, he up't the Hizentra to 4x a week, twice a day. I live in Michigan and go to U of M. The doctor now is advising for me to consider Rituxan. I also have a a elevated protein in my blood.

The Hematologist and the Neurologist think MMN and this elevated Protein may be related, not sure however. It seems the Hizentra works well, but need more as time goes on. It is also very expensive, my insurance and Medicare pays most of it. I am worried trying Rituxan since I could not tolerate IVIG. Would like to hear from you and others?
Maria