Anyone have Multifocal Motor Neuropathy ??

[Braveheart07]

Hi,

I am new to this post----just wondering if anyone has had experience with Multifocal Motor Neuropathy with Conduction Block and what has worked for you. I am scheduled to receive IVIG therapy soon, and am curious about that as well.....Any info. would be greatly appreciated..
Thanks !! Doug

[dahlek]

CIDP and have gone thru the whole cookbook of tests to get that precious diagnosis.
I suggest you take a look at the following web sites and get oriented first to understand what all is happening to your body:
This is a doctors' way of diagnosing Peripheral Neuropathy, don't discount it, as it describes all the tests that eliminate PN and a whole slew of other stuff to get to the MMN diagnosis..[besides feeling like @#*$!]
http://www.aafp.org/afp/980215ap/poncelet.html
Usually for PN folks, the MMN is diagnosed at somewhere in the 'middling' stage of tests...I think

Another diagnostic resource was put together by a PN member along with other members' input. It outlines over 96% +/- of all tests that could be done to diagnose PN, autoimmune diseases [CIDP {my issue} and MMN {your issue}] and other neuro aspects that overlap. http://www.lizajane.org/
To help you keep track of it all, tho...you have to get copies of all your tests. A frustrating thing true, but very useful if you have to move or for a heap of other issues as well.

One excellent resource is a magazine published w/help from IVIG manufacturers called IG Living. www.igliving.com Suscribe to the 'e-zene' an on-line magazine and save trees but you have all access to past issues. It's chock full of info about all folks who use IVIG for immune diseases. It's a free resource and I have personally found the folks there helpful to me and to many others who have problems getting their IVIG for all sorts of reasons...They also answer all sorts of questions, be they simple ones or complicated ones. They are great!

This is from an international association about CIDP pain [my problem] but it is useful in terms of explaining what is happening to your immune system...
http://www.cidpinfo.com/about_this_site/site_map.aspx
Also about the whole diagnosis 'menu' that consists of a sort of checklist of 'things' that have to be eliminated before deciding it's MMN or 'something else'.

This is the whole menu of neuro issues in a somewhat technical format:
http://neuromuscular.wustl.edu/ It does help outline the distinctions between MMN and other neuro/neuropathy issues -many many overlap. You might need access to a medical dictionary for this one, but it is a goldmine of info in terse format.

After you read all that, and aren't cross-eyed, I encourage you to check out the 'Peripheral Neuropathy' forum -
http://neurotalk.psychcentral.com/forum20.html
It's interesting because we all seem to have 'other' medical issues as well. And are a curious and frustrated bunch.

As for Info on IVIG, I've found that the IGLiving source is a truly reliable source for info about it. I have also met and grown to appreciate many folks who receive IVIG for MMN, I have received IVIG for over 3 years for my CIDP and KNOW I am soo much better for it!

IF you have any questions about getting and receiving IVIG, please don't hesitate to ask...either post here or thru a PM... It IS important that you be thoroughly informed about the IVIG; How it's put into you; the side effects, good and bad; and the safeguards and safety of it all. It is very special stuff! It can make a biig difference in your life and I truly hope that is what happens in your case...you get a bit of your LIFE back! I truly hope this all helps...I've got lots more info if you want it... - j

[oldaugie]

Hi,

I am new to this post----just wondering if anyone has had experience with Multifocal Motor Neuropathy with Conduction Block and what has worked for you. I am scheduled to receive IVIG therapy soon, and am curious about that as well.....Any info. would be greatly appreciated..
Thanks !! Doug


Hi Doug:

I was diagnosed with MMN with CB in October and started IVIg treatment immediately thereafter. The IVIg worked wonders for my mobility issues (prior to the treatment I'd essentially lost the use of my left hand) in that they appeared to come back fully within the first 7 days.

The IVIg has not been bad - Luckily I';m in a position to take enough time off so that I don't have to work on treatment days as I find that particularly difficult.

The most difficult thing I'm struggling with now is the stamina/fatigue issues. I'm getting a relatively aggressive treatment of IVIg (5 days in a row, every 4 weeks for 6 months) and am hopeful that as I get backed down to a maintenance dose my stamina and strength will improve.

[Ollie]

Hi,
My wife's doctors are starting down the MMN road with her. She does not show conduction block from the ulnar nerve, but had some conduction block from Erb's point. I hear wonderful things about IVIG, and I am hoping that she regains some of her strength in her hands and that her feet start to feel better as well.

[Lea1979]

I have MMN and have minimal use of my left hand. I am showing signs of atrophy and am experiencing painful cramps in my left hand and left leg. The doctor suggested IVIG treatment which I am scheduled to receive in the next few weeks.

Please keep us posted Braveheart07...I hope everything works out for you.

[Braveheart07]

Thanks to all who responded---
dahlek--WOW that's alot of helpful info.--thanks so much---I have been on another board, and doing tons of research, and sort of forgot about my thread here--sorry for the delay--- I have been through 2 rounds of IV therapy ( 4 days 3 weeks apart)--and so far I haven't noticed any difference...I really thought I would by now--I have one more round to go in 3 weeks--we'll see what happens---I'm looking into possible Lyme disease--my symptoms seem to indicate it's possibility--Have an appt with a LLMD on 4/2--I will take everyone suggestions here--Thank-you so much for them-- Ihope you all are doing well and have a great Easter, and SPRING !!--Doug

[stdoubt]

I was diagnosed with MMN a few years ago - initially just some minor weakness in my right hand. Gotta say my consultant wasn't really very helpful, but after a little research of my own, I decided that I'd prefer not to seek treatment. My main reason (apart from avoiding blood borne infections - i am a bit paranoid :) ) was that I read that IVIG treatment only worked for a few years, then it all started to go downhill again. I figured that it would be better to wait until (if) my symptoms got serious before treatment, as that would be when I'd really need an effective treatment.

Now I have another symptom (weak calf) and have done a little more research, I am beginning to wonder if I made the right choice. Wondering about the opinions of anyone who has taken the treatment, and those who have not.

Also, how does insurance typically take to IVIG for MMN? Will it pay for the whole treatment, or is it out of your own pocket?

[fireman0224]

I was diagnosed with MMN a few years ago - initially just some minor weakness in my right hand. Gotta say my consultant wasn't really very helpful, but after a little research of my own, I decided that I'd prefer not to seek treatment. My main reason (apart from avoiding blood borne infections - i am a bit paranoid :) ) was that I read that IVIG treatment only worked for a few years, then it all started to go downhill again. I figured that it would be better to wait until (if) my symptoms got serious before treatment, as that would be when I'd really need an effective treatment.

Now I have another symptom (weak calf) and have done a little more research, I am beginning to wonder if I made the right choice. Wondering about the opinions of anyone who has taken the treatment, and those who have not.

Also, how does insurance typically take to IVIG for MMN? Will it pay for the whole treatment, or is it out of your own pocket?

I was also diagnosed with Multifocal Motor Neuropathy, My insurance paid 100 % when i was receiving the treatment in a doctors office. Now im receiving it in the hospital ( Outpatient) and i now i have to pay 10% after what the insurance has paid. Are you on disability ? If not you might want to look into that. Im on social security and im 25 and it pays alot better than i thought. Also i think you made the wrong choice about putting off the treatments when your symptoms started showing, reason being said is that i did the same thing and the worst mistake i ever made because i was a week or two from being on my death bed. I am also taking IVIG once every 2 weeks, and on Rituximab ( chemotherapy) very good treatment, a month or so after my first treatment of Rituximab I've started to regain some strength and walking a little bit better. On the Rituximab treatment they have me setup a treatment every 10 weeks for 2 years. Really the best medicine for this disorder is to keep high spirits, keep a good attitude as much as possible, and stay as active as you can ( whatever your body will allow ).

God Bless Everyone and their families that have been affected.
Good Luck,

Steven

[bazzab]

I have had MMN with CB since 2000. Left arm and hand weakness and tremors. Symtoms began in 2000 and diagnosed in 2001 ( first diagnosis was Motor nuerone), began treatment with Ivig (Intragam) 150gms at three monthly intervals, this treatment increased strenth levels in the short term. Over the years the time between Ivig infusions has been decreased. Now recieving 90gms every 5 weeks. My self testing is to do a bicep curl with a 1 kg weight and record the number of times that I can lift it. At the start my peak was 30 times now my peak is 9 times, so the effectiveness of the Ivig is decreasing. These records have all been charted and the Drs love it.
In October 2007 I was treated with Rituximab, this increased my strength level (16 lifts) but only last for two months then back to previous levels. In Dec 2008 I commenced a six month course (1 per month) with cyclophosphamide, I have had two doses as well as continuing the usual Ivig. Small improvement after the first treatment, still waiting for the second to kick in.
has anyone else been down this path and is it worth it.

[ellelee]

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?

[fireman0224]

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


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?

[Teacher999]

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!!

[bwvasquez]

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*

[Run1968]

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.

[Msteven1]

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.

[Run1968]

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.

[Teacher999]

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.

[Run1968]

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.

[ramcatluvr]

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

[ramcatluvr]

:Thanx: 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

[di2005]

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 Hi ramcatluvr, my MMN started the same as yours. Actually I had right foot drop which has gone slowly up my right side. This all started about four years ago. I have had a couple of rounds with IVIG treatments and I feel they have helped. I would like to hear from you, you are the first person I know of like me. di2005

[rbpug]

Hi,

I am new to this post----just wondering if anyone has had experience with Multifocal Motor Neuropathy with Conduction Block and what has worked for you. I am scheduled to receive IVIG therapy soon, and am curious about that as well.....Any info. would be greatly appreciated..
Thanks !! Doug

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.

[di2005]

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

[nate]

I have MMN. I first experienced symptoms almost 20 years ago. They were so mild I did not act upon them at first. When I did it took several attempts and multiple doctors to get a diagnosis. I start IVIG on Sept 14 2009. Anyone had luck with Rituximab? My symptoms seem to be progressing more quickly now with the jerks getting worse but I have not had cramps yet.

I live in Dallas and am looking for a support group or even one other person to talk to.

Nate

[rbpug]

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.