I have - Multifocal motor neuropathy
 

Just been diagnosed. Would love to hear from any other folks who have the condition and experiences of it.
IvIg treatment should this be taken with caution ?

many here have experience with IVIG...
 

I hope they will come along soon on this thread.

Motor neuropathies also are sometimes treated with
plasmapharesis. This is where your blood is removed, and
centrifuged down, and the liquid portion where the autoimmune
antibodies are found is removed, and the rest is put back
into you. It is very expensive and some insurances won't pay for it.

Motor neuropathies are treated more aggressively than sensory ones, since disability more rapidly.

Ivig
 

In support of Mrs D. I have CIDP and looked for the possibility of plasmapherisis but was told this would not work.

Recently I asked about IVIG but was told that it might have little value for me so I sit here taking my prednisone and looking for another option which may be stem cell therapy.

Certainly I would be very happy to hear that I could be cured/partially cured with IVIG.

Good Luck!

ps - where is a 'quick reply' icon - I am new to this (only my second post ever!)?

I am sorry I'm so late in replying!
 

I have CIDP [chronic inflammatory demeyelinating polyneuropathy] a relative of MMN. Only, my own issues affect primarily the sensory nerves. Either way, we don't seem to be working very well, do we?
Background is needed, and Sam, both you and nitro need to post more often so you can receive PM's with VERY specific info on very specific sites that might be useful... Since I can't post support group forum references here I can only refer you to background and sources which mite have what you need.
Background: These are up in the 'stickies' somewhere but read these to get the picture as to what all goes into diagnosis and then the options there are for treatments.
http://neuromuscular.wustl.edu/alfindex.htm Read about lab tests http://neuromuscular.wustl.edu/lab/nvworkup.htm#lab and then scroll down to Multifocal Musc. Neuro... http://neuromuscular.wustl.edu/antib...imdem.html#mmn
Then web up these put together by members of this group in the past....
http://www.lizajane.org/
Lastly is the following about the various diagnoses we all can get and the treatment options available to us. http://www.aafp.org/afp/980215ap/poncelet.html
That all said, I've met many folks in doc's offices and in infusion clinics who receive IVIG as a therapy..... My take on many folks I've met who have MMN receiving IG therapies is that the benefits far outweigh the costs financially [and ANY insurances here are critical] and side effect wise. All were successful beneficiaries of IVIG. A good source about IVIG is: http://www.igliving.com/ There are lots of different folks getting this stuff and it helps them! Subscribe to their 'e-zene' it's free and no junk mail? And you can look at all their back issues...they are also good with bunches of good resources and helping to get the 'stuff' as I call it.
Yes Plasmapheresis works for some, but an equal % benefit only from the IVIG and others don't benefit at all. [Please note that both PP {plasmapheresis as it's referred to} and IVIG are both considered 'invasive' procedures, so read carefully and learn about them thoroughly]
Enough for starters, so read, learn, and you will likely have questions! No question is too silly! Besides, this stuff we didn't ask for, so we gotta find ways to deal with it! Post! Please! - j

I am on IVIG
 

Hi, welcome and sorry to hear about your diagnosis. I have idiopathic peripheral polyneuropathy - sensory with demyelination and some axonal. They think it's autoimmune but don't know for sure. I was diagnosed about a year and a half ago, and have been having IVIG for about a year now. I go once a month for 2 days back to back. I used to get 50 grams over two days, now I get 100 grams over two days. It takes about 6 hours a day. I sit an armchair while the product drips by IV. IT is not painful or uncomfortable unless you don't like needles:winky: but is is time consuming. The main side effect you can get is head aches, I've had a mild one but it goes away with tylenol. I also feel flushed and hot afterwards for a few hours. But I go straight back to work as soon as it's done, no need to go home or lie down or anything. there is a small risk of blood clots and of course a risk when you receive any blood product of contamination, but the risk is low. does it help? I feel a little better afterwards, but the nerve conduction tests continue to show a decline, making it questionable whether it does help (hence we have now doubled the dose to see if it does help....). The other option for me was prednisone which I really really don't want to do.... so I continue to cross my fingers and hope this works because, besides for the time it takes, it really is not so bad. Whenever I go to the hospital for a treatment there are a number of others gettting IVIG - new folks and "regulars' like me. some have been on for years. It is very expensive (they say $75 a gram) so the decision to provide it is not made lightly. Hope this info helps. Good luck.

I just had to post this link after reading the stem cell comment:
http://www.king5.com/health/stories/....77ca2bd9.html
If it doesn't work just go to king5.com and look under health link, we are so close to being able to use our bodies to cure ourselves.

Fran - can I ask a question please? How did you get a diagnosis of "idiopathic peripheral polyneuropathy - sensory with demyelination and some axonal." My neuro said "it does appear that you have small fiber polyneuropathy of unknown origin." And, "let's wait and see so come back in 3 months." It just seems that more tests need to be done to determine exactly what type of neuropathy I have...

Hi, I guess really I don't have a diagnosis - it is idiopathic - but I had nerve conduction tests, a muscle biopsy and a nerve biopsy and these are the findings of those tests. Interestingly with the nerve conduction tests they said that it appeared to be mainly axonal (with sensory symptoms) but the nerve biopsy revealed it was more demyelinative than axonal. Anyway, to make a long story short, I have had a lot of tests!!!!

Thank you everyone for your comments. I've was diagnosed with ALS for 2 years and this diagnoses of MMN is a huge weight lifted.
I'm justing finding little information on the net so all the information you folks have posted has been so useful..so thank you.

If there is anyone who has MMN please do get in touch.

thanks again

I have motor problems with my neuropathy - I have sensori-motor axonal neuropathy. Obviously the motor issues are more of a problem to me than the sensori stuff, though all the numbness is annoying. Mine is caused by my lupus which affects both my central and peripheral nervous systems.

You must be very glad to have the ALS dx lifted - phew.

cheers

raglet