I haven't officially been diagnosed yet as I need to start IViG treatment as soon as my doctor can organise it however, I know I have MMN.

I have muscle atrophy of my right hand (no thumb muscle) which means I cannot pick things up properly, have difficulty writing and cannot do up buttons or zippers or turn a key in a lock with my dominant hand. I also have difficulty using a knife to cut up food.

My fingers cramp as does my right leg and I am constantly lethargic.

It's taken 10 years to get to this point where I may finally get an answer to my problems, I just wish it hadn't taken so long as if it had been detected earlier I may not have had muscle wastage and may have recovered much quicker.

Doug, I've had MMN since 1995, and have been on IVIG since 1997. I'm still working full time and living a fairly normal life. I was an active marathon runner when I was diagnosed so I have given some things up. I recieve a "treatment" every 12 weeks and this is crucial to my well being. As a veteran of this therapy, I would be happy to answer any questions you might have.

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

I am new to this post. Diagnosed with 'MMN' this spring, 2014. Had my 4th IVIG a week ago, once every 4 weeks. I think I'm seeing some small improvement in my right leg at least. It did start for me in my legs from the knees down to my feet. I'm wondering if anybody has had much luck with diet modifications, immuno therapy etc.???

The only thing that more or less reliably helps anyone is IVIg. Only 70% of people respond to it, however. The next most common current treatment is rituximab. Results are spotty. Three MMN patients have received hematopoietic stem cell transplants. One sees improvement after two years, one sees no change after two years, and one has been too recent to show any results yet. A fourth is going for his transplant later this summer.

No one has shown definite improvement due to other alternative therapies, although it can't hurt to do things to improve your general lifestyle and support your overall health. Personally, I went on a very low carb diet three and a half years ago. The progression of my MMN has slowed and somewhat stabilized, but it's impossible to say whether that is a result of the IVIg, the diet, or various supplements. I can say that I have not had a cold or any other illness in that time, despite other family members having regular bouts of crud.

Sorry to hear you have been diagnosed with MMN, at least it is not Lou Gehrig's disease. That was my original diagnosis, but was diagonosed with MMN in January 2010 and started heavy IVIG treatments. 220 grams every four weeks for the first few months.

Improvements in strength were noticed shortly after, sorry I can't remember a more specific time frame but within six months. I was unable to stand on my tip toes or do a calf raise(lifting my entire body). Now I can without any problems, my left leg was affected more than the right.

My left hand is weak without IVIG treatments. I now get 110 grams every four weeks with infusions done at my home starting this year. I use to have to go to an infusion center.

IVIG treatment is the best remedy for MMN. The IVIG restores anti-bodies and prevents further nerve damage. I did read someones website, it is all about a guy diagnosed with MMN and he only eats organic foods and does not get IVIG. He claims he is doing fine with diet alone. Please remember this is only one person I have ever heard about but this is a very rare disease and as you can tell from the posts here that very few people even discuss it. The troubling thing for me is that I will always need these treatments and they are very expensive. My insurance companies gets billed around $30,000 per treatment, luckily the cap on insurance policies has lifted. Hope this has help, just remember to stay positive and live each day to the fullest.

I recently had a blood test to rule out peripheral neuropathy due to diabetes. It came back positive for MMN. I have already been diagnosed with acquired peripheral polyneuropathy. The neurologist wanted to start me on IVIg right away. I told him I wanted a second opinion since I have absolutely no symptoms of MMN. So in January 2015 I am going to the Univ of Washington to see another doctor for another opinion. Probably get another blood test, which is fine with me. There is only one lab value on the test that pointed to MMN. It was Asialo-GM-1 Ab (IgG) Results were 1:200 Reference range is <1:100 titer.