I'm sorry to hear that you are going through this. But let me tell you something that has kept me going each and everyday. That's keeping your spirits up and having a good attitude on the situation that's going on. I know it's hard, I know. I'm truly sorry we're all going through this horrible disorder. As for the treatments go. They are great. they've worked for me very well. I'm also on chemotherapy treatment called Rituximab. This did not make me sick at all,or lose any hair of that matter. I've only had one treatment of that so far. I've been diagnosed with this for almost 2 years now,so I know exactly what you are going through. Best of luck. Will keep you and your family in my prayers.

Steven

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.

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.

Thanks so much for your information on the different websites. So far I've been doing my own research (to my hubby's chagrin) to try to find out what the heck is going on with my body. Had symptoms since Dec 08 and finally getting to the point with doctors that hopefully, I will be diagnosed within this coming month of June. CIDP was ruled out already along with MS and LUPUS,etc. Very good neurologist did all the tests thinking I had CIDP and surprised himself when the tests came back negative for it. He has referred me on to a different type of neurologist now when he said I might have MMN. I have seem to come down to either MMN or possible ALS. Doctors don't seem to want to help much and was having insurance problems with the referrals to more major doctors. I think I'm finally over it. My problems started in my legs, which seems to be sort of unusual. Most people seem to have it start in their hands. Anyway, thanks for all of the different info. -B

I am awaiting a diagnosis of either MMN or ALS and my referring physician seems to think the treatment of choice would be IVIG if it's MMN. I was hesitating as to whether or not I wanted to go this route or find some type of natural (herbal/physical) therapy instead. I think with everything I've read here and other places on this site my best bet would be to go with the IVIG. Thanks for helping me make this decision prior to the diagnosis. It has helped clear some of the brain fog I've been experiencing lately. -B