Multifocal motor neuropathy - Neuropathy Message Board

levchenko · 10-08-2006, 05:50 PM

start of this year i noticed i couldnt use my left arm as well as the week before..it just felt weak. when it got to the point about 2 weeks later where i could not bend my arm i went to my Gp who referred me to a neurologist who after MRI, lumbar puncture and an examination by a panel of others gave me the diagnosis of multifocal motor neuropathy. during this time the condition worsened and also started in my right arm. now i cannot bend either arm at all at the elbow , both bicep muscles are severly wasted and getting worse , i have severe pain in first both shoulders and now elbows from having to do EVERYTHING with my arms fully extended or tucked up against my chest and theres stuff like heaps of twitching in my shoulders and arms. i recently had a test where they checked for broken nerves using mild electric shocks and needles to listen to the nerves working which showed nothing apparently but i have to wait three more weeks to see the neurologist.

I have had two courses of intragram-p which i am told is a blood product which i guess is IVIG ? which didnt do anything for me at all except make sores appear on my face and had me feeling very sick for weeks after each time.

well thats where i am now and i can see lots of people here can relate in some way or another but can anyone tell me more about this kind of neuropathy? this neurologist i am seeing doesnt want to answer too many questions it seems to me and if that continues I plan to get a new specialist..

I am sorry for length of post but all of this is very sudden and i am getting more than a bit freaked...

6foot3 · 10-19-2006, 12:23 PM

Levchenko...Multi Focal Motor Neuropathy is an inflammatory autoimmune neuropathy..The T-Cells are attacking the peripheral nerves myelin/axons so the impulses cannot transmit. Very complicated to treat and deal with but not life threatning like ALS... Usually rounds of IVIG are the standard treatment.You might want to research more of inflammation and see if natural antiinflammatories (omega-3 oils, tumeric, ginger) and diet (low glycemic carbs and no trans fats ) could slowly calm the immune cells. Also some research on leaky gut and autoimmune connection so research these and see what you think.....

MelodyL · 03-09-2007, 06:19 PM

Hi, my husband has had Idiopathic Peripheral Neuropathy for 18 years. They finally did a spinal tap last month and protein was discovered in the spinal fluid. His neurologist said "then he is a candidate for IVIG. And right now, he just had his 3rd infusion this morning. I looked at the bag and it's called GAMIMUNE. He is on 6 hour infusions, and after he comes home they do the home infusion thing after 2 weeks.

So far, he is tolerating everything just fine. He says his PN is a little better, but I noticed his psoriasis is flaring up. Don't know what this means?

I am new to this IVIG thing.

Anyone have any coments, it would be most welcome.
Thanks,
Melody