Hey everyone -
Just stumbled across this site during my monthly "Let's look up online if they've discovered anything new about MMN" search.

I'm currently 29 years old but started experiencing weakness in my hands when I was 26. Over the course of that first year of symptoms, I got to the point where I suffered from complete wrist drop in both hands. Being a 4th grade teacher, this was tough for me. I dropped pencils and markers in front of my kids, couldn't type or write on the board without holding one of my wrists up, and I dreaded having to shake parents' hands due to the embarrassment of my condition. My lifelong hobbies of playing piano and volleyball were stripped from me - and took normal happy-go-lucky personality with it. It was the toughest year of my life.

After trying to fix my 'strength problems' with physical therapy, I was told I needed surgery to remove discs from my spine that were believed to be putting pressure on my spine, resulting in my weakness. Two removed discs, a titanium plate, and six screws later to do the fusing of my new cadaver discs, my surgery was over and my strength continued to deteriorate. All that, .....for nothing.

Believe it or not, it was my MOM (in an attempt to try to help her sad, scared daughter) who happened to find Multifocal Motor Neuropathy online. I asked my doctor about it, and after several tests, he agreed it was what I had. I've been seeing a new neurologist and he too diagnosed me with MMN.

I've been getting IVig for the past year and it has worked wonders. Unfortunately for me, I have to go once a week to get treatments. I receive my treatments in Ambulatory at our local hospital, and my insurance covers 100%. I feel truly blessed.

I had a check up appt. with my neurologist today who told me about Rituximab. He said it was a newer IVig medicine that was still being researched. He said it may be something I want to consider down the road, after it's been researched more, seeing as how I will probably need treatments for the rest of my life. Those of you who are on Rituximab - do you experience any side effects? Can you truly last 10 weeks before you need another treatment of it?

I find additional strength from amazing friends and family and sites like this that make me realize I'm not the only one who suffers from this. I am also thankful there IS a treatment, despite the fact that I have to go every week to get it.

The more we talk about this, the more attention it will get, and hopefully they'll find a permanent cure! Hang in there, folks. We can do this!!

I'm so glad to find a forum with others who have MMN. I have been searching since I was diagnosed in Nov. 2008. I had been suffering and searching for a diagnosis for 3 years. By the time I received IVig treatment, I had lost most strength in my hands and had wrist drop. My muscles had begun to atrophy. Luckily, I had already found a medicine for the jerking, but I still had muscle cramping and mild tremors. I also have some problems with my feet, but its not too bad.

The IVig therapy worked miracles for me. I was vastly better in three weeks. I had three days in a row and then once a week for 2 months. I had a setback so I had another 3 days in a row recently. I also have it every other week. The new doc who made the diagnosis also recently started me on azathioprine. He said it would take up to 6 months to work though.

I hope that we can all communicate about the struggles of this problem. *edit*

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.

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 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

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

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.

I just got diagnosed with MMN. Which in my view is a good thing I had been very worried about having ALS due to my symptoms.

I was told I needed 20k infusions regularly and unfortunatly I am in the state of being uninsured and far from rich.

Can anyone point me towards good aid for treatment costs. Has anyone had success with medical or SSI?

please let me know.


TO the previous poster, I was told by my neurologist 80% of people respond with in weeks to the treatment, and often get back a huge amount of strength. I wish you luck. I will be starting mine as soon as I figure out hot I can pay.

Hi Ellelee,

I am in my 60s and am presenting very similar to you. I am wondering how you are and if anything has helped your recovery? I was on Immunoglobulin therapy for 3-months which didn't help my initial symptoms (weakness and foot drop in 1 leg). I went off and was put on chemo and have declined (within 6-months) to the point where I can no longer walk. I can stand for a few seconds of that. I have to use a wheelchair. My antibodies just started dropping so I'm hoping to stabilize and gain some mobility. I am wondering where you are in your journey and if anything has helped?

Anyone have a similar experience? Needing words of encouragement. I want my life back.


QUOTE=ellelee;466676]I have just been diagnosed with MMN myself. I'm only 23 years old and I've been having weakness in my left leg. I can't get up, walk, stand for long periods or climb stairs. I've found out that its now in both legs and both arms. I was told that i had a viral infection and my white blood cells attacked the virus then saw my nerves as a threat and attacked them as well. I also suffer with drop foot syndrome. I'm very miserable and my knees keep giving out on me. When I fall i can't get myself up someone has to literally pick me up. I was suppose to go see another Dr. to get a second opinion,but they can't fit me in. I believe that i'm having the iv treatment done thursday. I'm very scared and nervous. I want to be cured so i can pick up my son and run after him. Can anyone tell me what i should expect from the treatment?[/QUOTE]