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Peg B

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PALS
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10/2006
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Multifocal Motor Neuropathy (MMN)

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
:)
 
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Al

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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.
 

Peg B

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

Harper

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Nov 28, 2006
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PALS
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Texas
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Dallas
Information

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
 

hopingforthebest

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355
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02/2007
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NJ
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Mays Landing
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
 

Wally044

New member
Joined
Oct 10, 2008
Messages
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Diagnosis
03/2009
Country
UK
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North Yorkshire
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Skipton
Just got DX with MMN today but still in a state of flux because last month I was DX with lewis Sumner Syndrome. Started with respiratory probs since first DX and Neuro doesnt seem to be interested. Do you think I should go for second opinion.
 

LoneWolf

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01/2007
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england
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norwich
Sorry to hear about your problem Peg. I was put on immunoglobulins, the ones you are talking about for that diagnosis and I didn't respond to it. I've been diagnosed as some form of spinal muscular atrophy. Hopefully it will stay localised as they say but I don't know, I am fearful it is a slow progressive disease.
 

Peg B

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Hi,

I was confused when I saw the most recent posts sent to me. It turns out that they are in response to what I wrote after my first DX of ALS and the second opinion of maybe MMN. I wrote about that on Dec 11 2006. I have been on IVIG since Jan 2007. I am about the same now as I was then. My finger curls more and a second one is also beginning to curl. Up until Jan 2009 I have had a dual or differentiated DX of Atypical ALS or MMN. My Dr. is now sure it is MMN. I have seen her every 4 months at the University of Mich. neurology/ALS clinic. This time I am now scheduled to return in 6 months. I recieved IVIG every two weeks for a year and 1/2, and then for two months @ once a month, which was too long. Now I get IVIG every 3 weeks or so as the schedule permits. I get it tomorrow, which is about 4 days past the 3 week mark and I am very ready to get it.

I am permanently disabled, receive SSD and Medicare and I turned 60 last October 2008. I have a pension from 36 + years in education, so I am very blessed and my progression is extremely slow. I have had symptoms since 2002. I am now active about 4 hours a day and rest a lot. I cannot easily write but I can type now and I have trouble walking long distances, but a cane helps me walk anywhere I want. I can also do some exercise now. Please get a second opinion always for these serious conditions. Thank you for your kind posts. I do appreciate them very much. Sincerely, Peg
 

Zaphoon

Extremely helpful member
Joined
Aug 2, 2008
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2,855
Reason
DX UMND/PLS
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08/2011
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Peg,

Thanks for updating us on how you are doing. I'm very glad your progression is slow.

Zaphoon
 

Wally044

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Joined
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Messages
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Diagnosis
03/2009
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Hi,

Has anyone experienced dificulties getting holiday insurance with MMN? Or is it no problem?
Peg B is an inspiration keep going and thanks for sharing your kind words.
 

Peg B

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Messages
414
Reason
PALS
Diagnosis
10/2006
Country
US
State
Michigan
City
Flint
Hi Ian,

Thank you for your kind words. What is holiday insurance? It is not a term we use here in the U.S. Best Wishes, Peg
 

Peg B

Distinguished member
Joined
Nov 5, 2006
Messages
414
Reason
PALS
Diagnosis
10/2006
Country
US
State
Michigan
City
Flint
Hi Ian,

Thank you. What is holiday insurance? It is not a term we use here in the U.S. Best Wishes, Peg
 

Wally044

New member
Joined
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Messages
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03/2009
Country
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City
Skipton
Holiday Insurance

Hi Peg
As we get free NHS health insurance we have to pay for health care when we travel. So i was enquiring if this causes problems for us with MMN.

Ian
 

Al

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Joined
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Messages
7,960
Reason
PALS
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Country
CA
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We get travel insurance here in Canada. Most companies stipulate that you have to be stable with no change in meds for periods of 3 months to a year so we shop around. Over here some Visa cards give you insurance free if you pay your flight with it.

AL.
 
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