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juliesmile

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I'm hoping for clarification on MMN. My husband has muscle weakness, atrophy, cramping and fasiculation in legs. Beginning in left then right. I have read about MMN and was just wondering if in the absence of any loss of strength in hands or arms could it possibly be MMN? Just working on eliminating things.
 

Peg B

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Hi,

I am currently Dx with either "MMN" or "Atypical ALS" (slow onset) I am positive on the EMG/NVC (3/4 limbs) for ALS and have one "borderline conduction block" in right elbow (possible MMN). Most of my functioning problems are in my right hand/arm, but in a short time, I get very tired and sore walking . (DX 12/2007 - sympton onset 12/2002) So that being said I check a MMN site like this everyday. It is barely active in comparison to this forum, but reading over the threads may be of help to you. I do think that MMN also has leg onset, as that is lower neuron, but Ican't remember at this point. There are many there who have DX of MMN for 12 and more years. The site is noted below. Please let us know if you find it helpful. Best Wishes, Peg

http://www.ninds.nih.gov/disorders/multifocal_neuropathy/multifocal_neuropathy.htm
 
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juliesmile

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More confused

O.K. now I'm even more confused. Can you tell me what the Nerve conduction study tests for. We've had 3 EMG and all show nerve damage in both legs, more on left less so on right. Plus arms were considered inconclusive but not normal. No loss of strength in right leg or arms. Fasiculation in legs, arms back, chest. But I was hoping maybe he had MMN as it's more treatable, right? Anyway, I'm just so lost.
 

Peg B

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Hi,

This may help or make it more confusing. I took the following from this website:

http://www.emedicine.com/neuro/TOPIC724.HTM


Clinical and electrodiagnostic criteria for the diagnosis of MMN include the following:


Definite MMN

Weakness without objective sensory loss in the distribution of 2 or more nerves is present.
Definite conduction block is present in 2 or more motor nerves outside of common entrapment sites.
Sensory nerve conduction velocity is normal across the segments with demonstrated motor conduction block.
Results are normal for sensory nerve conduction studies on all tested nerves, with a minimum of 3 nerves tested.
Upper motor neuron signs, including spasticity, clonus, extensor plantar response, and pseudobulbar palsy are absent.
Probable MMN

Weakness without objective sensory loss in the distribution of 2 or more nerves.
The presence of either (1) probable conduction block in 2 or more motor nerve segments that are not common entrapment sites or (2) definite conduction block in one motor nerve and probable conduction block in a different motor nerve segment (uncommon entrapment sites).
Sensory nerve conduction velocity is normal across the segments with demonstrated motor conduction block.
Results are normal for sensory nerve conduction studies on all tested nerves, with a minimum of 3 nerves tested.
Upper motor neuron signs, such as spasticity, clonus, extensor plantar response, and pseudobulbar palsy are absent.
 

Arthur Candell

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Reply to Peg

I have all the symptoms indicating MMN. I have no apparent upper motor involvement, but am getting mixed diagnosis from neurologists. Some say motor neuropathy, some say ALS. A lack of positive diagnosis is depressing. I am in an assisted living facility, going downhill very slowly day by day and discouraged at lack of empathy and diagnostic ability by neurological professionals.
 

hopingforthebest

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Go to a ALS Clinic at a University Hospital for an evaluation. Nothing against local neurologist but how many ALS cases do they see? Go to ALS Clinic where they diagnosis many many cases.

Best of luck to you!
 

Geo

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If you have MMN They use IVIG ,i had them ,they do 5 visits and 5 injections they come to the house and the nurse puts a IVIG drip on you for apprx. 5 hrs. If this helps you have to have these at regular intervals
BE Prepared for the Cost ,mine was $30,000 . Insurance said yes we cover ,then sent bill for $30,000
I had to call the State Insurance board and they made them Pay Up . beware Geo
 

Peg B

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Hi,

I did not realize until today, that this forum had an MMN section. The stuff I wrote before was moved here I guess. Anyway, Today I had another test for the MMN/ALS. The NCS showed improvement and resopnse to IVIG, so they did not even do the EMG. The treatments have helped and it looks much in favor of being Multifocal Motor Neuropathy as opposed to ALS. I am going down to one IVIG treatment a month instead of two a month. So great news. Take Care, Peg
 

crystalkk

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Peg,

That is great news....I am very happy for you it's nice to hear positve things.
 

Al

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David created this forum about a week ago as he had noticed a lot of activity about MMN.
AL.
 

Peg B

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Reply to Arthur

Hi Arthur,

I am sorry I did not see your post before. I am so sorry you are not getting a better response from the medical community. There is another forum devoted to MMN you may find some comfort in reading through those posts.

As far as DX, I first had symptoms in 2002, and was told it was probably a pinched nerve. I was DX for ALS Oct 31, 2006 and possible MMN Dec 7 2006 at the University of Michigan ALS/neurology clinic. It is very difficult to DX. Are you getting IVIG? If so - does it help?

It sounds like you are going through this alone and it is very difficult. Please write back and let us know how you are. Sincerely, Peg
 
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Peg B

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Crystal,


Thanks for your reply and good wishes. Sincerely, Peg
 

sisgldnhr

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Great news!

Peg,

I am so glad to hear your good news! Lets hope that the meds keep doing their job! Its got to be such a relief knowing that its not ALS.

Doing the Snoopy 'happy dance' for you...........Sis
 

CindyM

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Hi Peg! FInally some good news around here! GLad to hear it! :-D
 

Peg B

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Thanks Sis and Cindy,

I am so grateful. God Bless you both, Peg
 
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