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

Di, I have had one EEG since the original one that cinfirmed my diagnosis. There was no clinical improvement from the first one but I was feeling much stronger due to the IvIg. As mentioned, I've been on IvIg for about 12 years with no side effects. I also take a prescription naproxen (500mg)an occasional tylenol #3 w/cod when the aches are really bad. The medicine that helps me the most is provogil (200mg). Provogil gives me the energy to exercise and stay active which helps keep my muscles from atrophying. This has worked for me. I hope it will help you.

Hello, I'm curious about these aches you get. I have had MMN for twenty years and I don't have any pain or aches. I was curious what type of aches you get and what you think is causing them.

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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