Was diagnosed with MMN in Jan. 2009 and started ROUND 1 of IVIG in February (5 weeks: 5 days, 2 days, 2 days, 1 day and final week 1 day). Noticed improvement in left leg after 4th week ... meaning that I could walk without limping, but still couldn't walk fast/run.

After about 2-3 weeks, the "high" wore off and needed to start back on IVIG. After a prolonged battle with my insurance company, started ROUND 2 of IVIG mid-April (2x per week for 4 weeks). My leg has improved slightly, but nothing like during Round 1.

My doctor wants to start me back up on IVIG treatments again ASAP, but need to deal with insurance approval again ~ crazy and infuriating!!!

I'm 40 yrs old and prior to all this (just over a year ago) led a very active lifestyle (hiking, skiing, running, playing soccer with my boys). I find myself wondering if the doctor has the right diagnosis? With such a rare disease is enough known about the IVIG frequency or is it just trial and error? Am I missing out on some treatment we should be doing now before nerve damage is done that can't be repaired? What more can be done aside from IVIG? Diet changes? If I limp at 40 what will I be doing at 60 yrs old???

Well, thanks for "listening" to me vent. It's good to have a place to go to do this and not feel so alone. Appreciate hearing all your stories and what's working for you.

Hi there I am a 20 year old. I recently was diagnosed with mmn as well (when I was 19). My concerns are almost identical to yours. I am getting very frustrated that my doctor knows very little about this disease and I am about to do my third treatment of ivig. To date I have had little to no improvement. I am lucky that it appears to be localized to my hand but does not mean it is not frustrating. I have constant twitching to the point where it effects me getting to sleep at times and cramping in my hand. Additionally I have some twitching in my tricep as well. My hand is weak but the weakness isn't apparent. The twitching is and I am starting to lose my patience with it. I don't know if my doctor has the right disease since my spinal tap came up normal. I do believe this disease, like many autoimmune diseases, is effected by stress. I was diagnosed while taking organic chemistry (I once wanted to be a surgeon) and it seems to make sense that stress can make it worse. My neurologist wants me to take antianxiety pills but I have many concerns with that as well. Does anyone else share these symptoms?
Additionally I thought it would be helpful to let you know that there is research going on in Italy with MMN that seems to be noteworthy. Also John Hopkins does research as well. The newest treatment I have heard for it is Rituxiamb (that might not be spelled right) a monoclonal antibody that attacks only certain antibodies that are attacking the peripheral nerve cells. Check it out. Best of luck to all and I am very happy I found a forum for this thing because with 1 in 100,000 there aren't too many people I can turn to to relate about my symptoms.

Interesting that your doctor did a spinal tap if he thought it was MMN b/c my doctor didn't do a spinal tap b/c he thinks I have MMN rather than CIDP. Makes me think of the saying "license to practice". My doc also did the very expensive MMN bloodwork and that all came back "normal", which from reading other forums I hear is not unusual (thus the question of why even do the test anyway). Thanks for the mention of newer treatment ... another thing to research.

My doctors also thought I originally had CIDP. They also did a spinal tap on me and it came back normal. Then they found out about MMN and felt it was a better fit for me. Some IVig treatments work quickly, others take longer. The second time I had to get my set of five treatments, it took nearly a week before I noticed any difference, while, the first time I had the set of five, I noticed the change quickly. Don't lose hope, just be patient!

My doctors also have mentioned Rituximab.

Two questions:

1) Has anyone thought about or tried and diet motifications for MMN?? Just relating what I've read about other auto-immune diseases and wondering if it's worth looking into (ie gluten).

2) Has anyone gone to an auto-immune doctor in addition to their neurologist?

Issues with insurance over IVIG treatments is making me look at whatever alternatives I can find.

I have had MMN for 8 years and have had, still having, IVIG. Have had Ritixumab and Cyclophosphamide . All of these treatments have worked but the improvements have not lasted, and my left arm (where I am affected) is slowly getting weaker and more my fingers are curled and my wrist droops.
I now wonder if there might be another way of treating this problem, diet, natural foods, vitamins etc. At 63 years of age I would like to slow this progression down if possible.
Has anyone gone down this path and if so what progress have you made.

I just spent the last week ay Mayo in MN getting poked and prodded. They concur with the MMN conclusion, though the doc did say they can't be definitive without observing for months or years. He's recommending doubling the IVIg dose I was getting, which I regard as a positive result: My doc at home has no experience with MMN (despite working at the Univ of Utah, not a small population), where the Mayo sees as many MMN cases as anybody else, I believe. My Utah doc was considering plasmaphoresis or cyclophosmamide next, both of which sound pretty scary.

As for how people respond to IVIg, Dr. Jones (Mayo) said you don't generally get reversal of current damage--what is hoped for is to stop the progression of the disease. I could live with that--so far having lost extension of 3 fingers on my left hand, have some weakness, etc. Thankfully I'm right-handed.

It's kind of discouraging to have so many (well, relatively) responders here say that the IVIg didn't help much.

I also had a lessening of fasciculations and cramps with the 5 months of treatment just concluded. Can anybody else share their experience? Maybe this forum is self-limiting to patients still seeking answers, and those who do experience successful results tend to not follow the forum?

I just got my diagnosis last week, after 9 months of lots and lots of horrible testing..not sure whether to be glad to finally have one or not, considering what it is and the fact that my neurologist just kept saying how VERY rare it is. I too have lost the use of my hand and have the curling in my fingers (pain & twitching now too), only bad thing is that it's in my right hand and I am right handed..really stinks. Pretty terrified about the IVIG treatments that they say I have to start ASAP!!! They told me that there are NO SIDE EFFECTS. (Could someone please be honest with me? This Doc has lied before.) So as to prevent progression want to start next week...only thing is, my legs have already been affected, they have just put it off to due to arthritis from a car accident about 13 yrs ago. I am also very worried that my husbands insurance co. won't pay..and I haven't been able to work in months..still waiting on Social Security decision, but who knows when that could happen...38 yrs old and feel like I am 150 and thats on a good day. Will this get better?

Hi Jennyd1230. I'm sorry it's your dominant hand.

IVIg: the only side effects I've experienced have been some headaches. Having them slow the infusion to 150ml/hr helped a lot. This made for 9-hour sessions at my earlier dose; I brought lots of reading material, and thank goodness for iPads. I did have a night of throwing up after my initial, 3-day course of 2g/kg. On the bright side, after a week I noticed quite a lessening of twitches and cramps, which then came back two weeks later, so we tweaked the treatment schedule to every 3 weeks, one day, 1g/kg. After 5 months that positive effect waned. Then I took 2 months off (waiting for Mayo results) and the Mayo prescription was twice the IVIG monthly, but split into more frequent treatments. Sadly, now I notice no improvement in twitches and cramps, and headaches are more easily triggered--for instance if I have more than 1 glass of wine. However, since I haven't lost the use of any more fingers, I hope the IVIg is helping. I lost my left thumb extension last April, index finger in May, then IVIg started, lost half a pinky in August, and none since then (knock wood).

The Mayo doc told me the IVIg mostly prevents or slows the progression, rather than reversing it, which would still satisfy me, though as a result of the MMN I've now developed tenosynovitis in my left thumb which *does* hurt, and now I'm wearing a splint to try to improve that. Adding injury to insult, as it were.

I had weeks of sleepless nights worrying about the money, till my insurance decided to cover the treatments. It turned out to be a silly technicality that was slowing things up. All I can say is, don't hesitate to jump into the breach if one party or another is dragging their feet. I am sooo thankful that the new health care bill took away annual and lifetime caps on coverage--it definitely affects IVIg!--and sooo worried that the bill's opponents will manage to repeal all or part of it. I'm self-employed and have to buy my own insurance, which is now up to $950/mo. for me and my son, and I have to be able to keep working to keep paying the premiums. I still worry that someday it might come down to a choice between treatment and, say, my family's home. I have 6 years to Medicare. I wonder how Medicare does with IVIg...

I'm now looking into a ketogenic diet to see if that might help, in case the IVIg (or insurance) fails. Are we allowed to post links here? I started with a New York Times article titled "Epilepsy's Big Fat Miracle" (you can google it up) and started googling around based on things I read in the article. Keto diets are a proven, amazing sometimes-even-cure for epilepsy, and research is now being done to see how it might affect Parkinson's, Alzheimer's, and all sorts of stuff. It appears to confer protective effects on the nervous system, and that's just what we need in MMN.

HI all,,have ben diagnosed with MMN DEC 23 2010,,i have had it for about 18 yrs and know one knew what it was, doctors did an ulnar nerve decompression that i didn't need and was told by different doctors that i had, ALS, neurologic amyotrophy (Parsonage-Turner syndrome ), Alcoholic neuropathy , no one had a clew until i went to University Hospital in Syracuse NY. i should be starting IvIg soon if Medicaid will pay for it,,its ben so long now i don't know how well the IvIg will work,,im not going to get back what i lost over the last 18 yrs but it may stop the progression. i hope i can get SSI because i can't get disability because i didn't pay in for so long,,not being able to work a real lot the last 10 yrs has screwed me up..i can hardly walk some times, and when i do hard work it takes me 3 days to get over it. it seems now that both my wrists(right hand atrophy) get hurt every time i do something. i guess it is what it is..