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AFRAN

New member
Joined
Dec 3, 2016
Messages
1
Reason
DX MND
Diagnosis
01/2016
Country
FR
State
PARIS
City
PARIS
I have for almost two years an advanced muscular weakness with atrophy in my left leg. The weakness & atrophy evolution have not been linear. I never had muscular cramps but fasciculations.
The diagnosis is an atypical Motor Neuron Disease.
The main atypia are, a level of proteins in the Spinal Fluid bordering to 1g/l, a motor and sensitive deficit (Electromyogram) and a muscular hyper fixations at the Pet scan .

Finding someone with similar symptoms would be helpful.
 
Hey Afran,

Sorry to hear about your diagnosis :(

My husband's MND started in his legs too. First one then the other. He can still walk though as it's progressing slowly for him. We did a blood test which revealed he has a mutation in his SOD1 gene (N65S). He had cramps though and fasciculations. Did you do any blood tests?

I looked up Atypical MND and it says "Motor syndromes in which the deficit is restricted to the UMN or LMN through the entire course of the disease are described as atypical MND in this review". When i looked up cases of SOD1 N65S, i found that they are LMN only... I haven't been told my husband is Atypical though... I hope someone here can help you.
 
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