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Monolemic amyotrophy?

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KANSASTOM

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My last visit at the MDA clinic the Dr. said I have Monolemic Amyotrophy. I have read about this condition and yes, I do match the conditions, except for a couple of things that are bothering me. The first one is this is a disease predominantly in Asia and Japan, I am of European descent. The second is I had occasional +1 positive sharp waves in my arms and my other leg, tongue and paraspinals, would Monolemic Amyotrophy be causing those waves? Has anyone been first diagnosed with Monolemic Amyotrophy or have any info relating the positive sharp waves in other parts of my body with Monolemic Amyotrophy? I am not sure I agree with this diagnosis.
 

liz

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Monomelic amyotrophy was my first differential. I was skeptical too since I was a 42 year old white lady living in the US.
 

crystalkk

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Tom,

My husband has a friend who is a white male from the US and he has Monomelic amyotrophy.
 

olly

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http://www.ftrdergisi.com/sayilar/62/116-118.pdf


hi kansastom,i googled it and found one article of case studies of mmn that indicate positive sharp waves seen in emgs.
hope it helps.

ps,the info does indicate it is usually upper body involved and tends to effect one limb.
you really should get another opinion if yours is global and your not happy with the diagnosed.
 

awieleba

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what is monomelic amyotrohy? Is it a diagnosed or a condition of a limb or body? what is the prognosis of this? You, know me..always wondering but NOT googling anymore. Still looking for my diagnosed..... but not as hard.
 

crystalkk

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April,

It is atrophy and weakness of just one limb, it is not terminal. If you look at Caroline's link it explains it
 

Danijela

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Rare condition, but there is a Facebook group set up by a young guy from the States (I believe) called Colin Farbotko, for those diagnosed with monomelic amyotrophy. It may the place to compare notes. Just out of interest, and if not innapropriate I would like to know how old the people who are diagnosed are (Kansastom and Crystal husbunds' friend). It is meant to be a condition that presents mostly in late teens and 20s, but there are cases of people being diagnosed later in life.
 

KANSASTOM

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I am 44 years old, although I have felt like something has been wrong with my left leg since I was born. I really don't think what I have is Monolemic Amyotrophy. I really believe I have something along the lines of adult onset spinal muscular atrophy. This condition may also be what my father has and what my grandfather had. The best thing that came out of my appt at the MDA clinic was the Dr. said, "This is definetly not ALS". So I am goung with Monolemic Amyotrophy until something changes.
 

crystalkk

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Danijela,

I believe my husbands friend was diagnosed in his 20's (I don't know the exact age) He is 40 now.
 

Danijela

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Thanks both. Kansastom, good policy. I am pleased for you lack of progression, and hope it remains a relatively benign condition. D
 
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