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?

My IVIg experience; keto diet?
 

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..

Multifocal Motor Neuropathy with CB
 

Jenny,

Before the IVIG I was unable to use my left hand and had lost much of the right hand. I had lost 60% of the muscle mass on the left arm and 40% on the right. My legs had started to have some problems as well. I run a huge computer lab, could no longer type and wondered how long I would be able to work.

I have now been on IVIG for at least the last (3) three years and have all of my muscle mass back, and hardly any control issues. Over the last year I have lost 76 lbs. with no change in diet or exercise.
Side Effects:
During the first 5 day phase I ended up with severe headaches and had to stop after day 3, I however have had few headaches since then. My biggest side effect is feeling rundown for a couple of days after the treatment.

Life has greatly improved for me.

Going from no or little use of my arms and hands to being able to do everything again is a reversal in my book. Why they don't consider that a reversal however is beyond me.

I still have a ways to go before I reach the max dosage you can have and expect based on my current progress to be ok for the next 10 years.

Not at all bad for someone who has had Multifocal motor neuropathy (MMN) with conduction block for 16 years. You can be glad it only took 9 months for you, it was over 10 years for me and I was told I had everything from Luke Garrett disease to MS. Or perhaps it was all in my mind. If you think that did not ruin my day….

There is hope and it really could be worst. I will add you to our prayers tonight.
Ed

Great resource
 

I really appreciate all of the information. Seems This is such a diverse and enigmatic disorder. No one even seems to try to find causes. I have been trying to get to the bottom of this for over two and a half years. Was misdiagnosed with a disk problem and had back surgery and finally got the CIDP, MMN diagnosis this winter and have just now gotten approval for IVIG from the insurance. Just in the nick of time as I can hardly walk even with a cane. I will let the forum know how thew IVIG treatments work out for me.
Thanks,

PS Insurance finally relented after I had a Spinal Tap with positive protien marker. FYI

my story
 

i found the info here good, lots of different stories help too .
i myself have had Multifocal Motor Neuropathy with conduction block for 11years ,i was diagnosed within a week of seeing a dr about my fingers arching backwards and had not experienced any weakness as of then ,they put me on intragam infusions every 3 months after about a year i had severe weakness and had to leave work (lighting tech/rigger) within another year weakness had progressed and treatment became monthly then 3 weekly and the dose increased ,i am now on maximum for my weight (60gm) and have lasted about a year at this before noticing weakness at end of 2.5 weeks ,i have lost use of individual finger/thumb movement ,wrist movement on both hands ,left arm is useless as is left leg ,i have foot drop in both feet and have to wear orthotics to walk without tripping over .
it has ruined my life ,i used to be active and do physical activities as hobbies and work ,i was diagnosed 6 months after my daughter was born and my Marriage broke down when i had to leave work .
more to come when i can express how it has effected my life without becoming so angry

my story part 2
 

ok calmed down a bit now (lol)
i forgot to mention i did 5 weeks of apheresis then 6 months of cyclophosphamide ,the apheresis made me lose more muscle strength and use than the actual disease the chemo just made me sick for 6 months (which was handy when i was driving an 8hr trip twice every 2 week to see my daughter as my ex didnt want my daughter to see me waste away (thanks for that family court) .
fast forward 3 years of me going from job agency to job agency trying to find new work to not getting one interview. my ex moves to my home town and within a year my kid is now in my custody full time .(YAY)
i am still on intragam and am slowly noticing more weakness due to the fact you become immune to it after time .

my life is ok now but as you can see by my first post i have an anger issue due to not being able to do normal stuff with my kids and be a normal participant in the community .
i hope all the best for all diagnosed with Motor Neuropathy with Conduction Block and will say keep hope,,, stem cell research is our biggest hope (so if you do chemo save stem cells first).

and if any of you have any breakthroughs let us know as DR/PROFFS are just guessing

cheers and all the best
Lee

new MMN forum
 

It's so hard for people with something as rare as MMN to share experiences, *admin edit*

I hope we can benefit from sharing our stories with each other in a dedicated space.