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

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

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

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

Hi Nate,
I would be happy to talk with you. I have had MMN for 20 years and have learned a lot about what helps.

How long did it take you to get a diagnosis? I was finally diagnosed in Oct. 2009 and finished my first round of IVIg Dec. 14. Are the jerks the only symptoms you have? I live in the Tulsa, OK area.

Kelly

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

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.

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.