Anyone have MAMA (Multifocal Acquired Motor Axonapathy) ?
 

I have been been diagnosed with MAMA (Multifocal Acquired Motor Axonopathy), and my doctor wants to start me on IVIg. There seems to be little information about MAMA on the web.
Is there anyone out there who has this condition?
I've got atrophy in my right palm, forearm, and triceps.

I have had this condition for 10 years, I am happy to answer questions as best I can. There is little known about the condition you are correct, but I can at least share my experience and what I have learned. Let me know.

Wow! After waiting many months, finally someone answered my thread. I was beginning to wonder if I was the only one out there with this condition. I'm interested in learning more about this condition, to find out the best way to treat it, and what are reasonable expectations regarding the outcome of the treatment.

I've started taking IVIg, and have had two sets of infusions. A month after the third infusion, I'll have a set of neurological tests to determineif I am responding. Right now, it is too soon to say anything about the results of the IVIg; I understand it takes many months for nerves to heal.

What parts of your body are affected MAMA?
Have you tried any treatments? If so, what was successful?
And what has been your experience about progression if left untreated?

My apologies on the delay in a reply, I only just saw your message today. I am sorry I won't be more informative to you. Honestly, you are the first I've spoken to with this diagnosis. I have gone through 3 rounds of IVig, 6 months each. I did not respond to treatment. I am told I am one of the first with no improvement.Apparently for most there is either a halting of progression or even up to 30% recovery. This was my understanding years ago, things could be different now that the condition is becoming recognized world wide.
Both of my arms are affected, I have lost most use in my right. I hate to tell you that most of my arm muscles are afflicted. I have recently noticed a "funny" feeling in my feet and am scheduled for testing in a couple weeks.
How are you finding the treatments?
I found I felt sick from it for a day or 2.
I am curious to know if it helps you, this is a frustrating and scary thing. I think the odds are in your favor it may help.
Best of luck!

My doc is trying to pin down my diagnosis; so far we're considering "atypical CIDP" and MMN. Despite extensive googling, I don't think I've run across MAMA. How is it different from MMN? I just had my 3rd monthly IVIg treatment; so far I only notice a lessening of fasciculations. My left thumb & index finger are no longer extendable; I feel like my left hand is turning into a claw...

Hello, everybody I am Sajal Mondal, my brother in law (Dinobandhu S**) diagnosed with MMN or motor Axonapathy disease by CMC Vellore, India, few months ago. He is only 41 years old and having weakness in his right leg. After that he is received Cyclophosphomide infusion three times, but there was no improvement, between this period he is also effected in his left leg & wastage his right leg and he can't get up, walk, stand or climb stairs, then we again go to Vellore & Dr. Mathew Alexander advised us to take IVIG. Due to monetary problem we come back Kolkata, India and received IVIG (Immunorel) two times under health scheme. After receiving first infusion (under Dr.S.S. nandy) my brother has recover his right leg wastage & his biological changes was seen, after 2nd (under Dr.Sudhir Kumar) he is getting slite improvement but he can’t stand, walk etc & Dr. Kumar said that he can’t walking (99%) for rest of his life. We are going to take 3rd IVIG infusion in 1st week of January’2012. And after that we are decide to go NIMHANS hospital, Bangalore for hire opinion & rehabilitation.

Can anybody tell me about the positive treatment of MMN or motor Axonapathy?
Can he walking alone with or without external mechanical aperaters for go to freshroom or inside the room?
Can he survive from MMN or motor Axonapathy?

Please tell me everything, save his life for name of god & save my little sister’s family, they have a little daughter 4 years aged.
With love,
Thanking you.