Greetings:

Sorry to be here - sorry you are here also, but glad I can read about you and post this. Good news and bad news is what it all is. On Halloween I went for my third visit to a neurologist and he told me I have ALS. I asked if I had a second choice and he said "No." (My first bad joke.) This past Thursday I went to U of M (ALS clinic) and they confirmed I have an MND, but think it might be MMN, Multifocal Motor Neuropathy. My right hand looks a little like the pictures shared by grampal. I started having difficulty writing and cramping just prior to November 2003. I saw a neurologist in May of 2004 and asked if I had MS or ALS and she said no. I did have the EMG and other test at that point. At this time they are waiting for the blood work to be analyzed but plan to start me on IVIG treatments (intravenous immune globulin) and if that works then I have MMN and not ALS. If it doesn't work then I have a very slow case of another MND. I am showing signs of deterioration in my left arm and left leg also. I am very lucky as I was planning on retiring in June anyway after 36 years, have great insurance, family and friends. I am on sick leave and going on disability.

My question is I have found very little information on MMN and it is contradictory in saying it is not an MND as U of M said, and in other places it says it is, but with very slow progression. It usually attacks the hands first . My family and I are most blessed and super happy with this news but I still would like as much info good or bad as possible. Any information/experience would be much appreciated. This is also very very rare and I have not seen it on this forum. Thanks and God's blessings to you all, Peg
:)

http://www.neuro.wustl.edu/neuromuscular/antibody/pnimdem.html#mmn
Here is some rather technical stuff about MMN. They thought at one time I had it and did the IGG infusion and Cytoxan (cancer-auto immune) drug which didn't work but might for you. MMN is the better of the motor neuron diseases to get if you have to have one. Try typing cytoxan into the search feature and you'll find a bit about MMN. AL.

Thank you I will check it out. I appreciate this. Peg

Peg ...

Thanks for sharing the ... Do I have a second choice? :-D I'm going to use it as my own when an appropriate moment arises with my neurologist.

Relative to the MND's ... my sister's a medical professional and through her I've learned that diagnosis of these diseases is a 'rule out' procedure. The physician goes through a process of eliminating possibilities until what they have left is the most applicable disease. Much like Holmes told Dr. Watson ... "One rules out the impossible and what's left is the solution, no matter how improbable."

Most of the MND's are such low visibility illnesses -- ALS, Friedrichs Ataxia, ect -- that it becomes a hit and miss procedure -- plus their presentation varies so much from individual to individual. You've probably read about the frustration of getting a diagnosis expressed by many of the respondents on this forum.

Keep looking and researching and hopefully you'll find a consensus of opinion that more or less reflects the truth of the matter.

Harper

Dear Peg

I notice your post was back in Dec. Did you start your IGG infusions?

My husband finished his 2nd round of infusions and has not seen any results. He also developed a terrible rash. His neurologist locally feels he has MMN but we are seeing a specialist in Phila and he is not sure at this point.

My husband will have his third round of infusions (despite the terrible rash) sometime in March.

Hoping you are doing well and the infusions work for you!

Patty