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Anyone have Multifocal Motor Neuropathy ??

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Unread 02-11-2008, 05:01 PM   #1
Braveheart07
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Default Anyone have Multifocal Motor Neuropathy ??

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
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Unread 02-16-2008, 06:26 PM   #2
dahlek
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Default Doug I don't have MMN, but have

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
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Unread 02-18-2008, 03:04 PM   #3
oldaugie
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Default I've got it too MMNCB

Quote:
Originally Posted by Braveheart07 View Post
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.
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Unread 03-05-2008, 11:38 PM   #4
Ollie
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Default Mmn

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.
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Unread 03-10-2008, 10:31 PM   #5
Lea1979
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Default Any opinion about IVIG treatments?

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.
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Unread 03-23-2008, 11:39 AM   #6
Braveheart07
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Default

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
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Unread 12-28-2008, 07:53 AM   #7
stdoubt
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Default Life after IVIG?

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?
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Unread 01-03-2009, 11:14 PM   #8
fireman0224
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Default Insurance Payment

Quote:
Originally Posted by stdoubt View Post
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
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Unread 01-13-2009, 06:17 PM   #9
bazzab
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Question Treatment for MMN

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.
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Unread 02-16-2009, 04:00 PM   #10
ellelee
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Default hey

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?
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