anyway to tell if familial other than the sod1

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beckycooper31

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PALS
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12/2006
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Uni
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My maternal grandmother had suspected ALS and died at age 64 in 1960. After receiving her medical records I have the same symptoms and have been diagnosed with ALS. My SOD1 was negative. Should I have it repeated and/or are there any other test to determine if I may have familial vs sporadic. Thinking of my grandchildren.
 

ZenArcher

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From what I've read only 20% of familial ALS patients have the SOD1 gene mutation so unless you're in that 20% it means nothing.
 

beckycooper31

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Joined
Mar 15, 2007
Messages
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Reason
PALS
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12/2006
Country
Uni
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South Carolina
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Mount Pleasant
any other test

Do you know of any other test that may be available? Thank you. I don't guess it makes any difference but it would be nice to know in case other family members develop symptoms that are unexplained. Becky
 

ZenArcher

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Joined
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PALS
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Country
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State
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City
McEwensville
One of the first questions my wife and I asked when I was diagnosed was what is the chance of the kids having it? Although they didn't give us concrete numbers they basically said don't worry about it. If you look at the percentages of familial ALS against all cases it makes sense. 1 out of 100,000 develop ALS and on the high side 10% of those are familial which means the chances of developing familial ALS are 1 in a million. These aren't solid figures just examples.
 
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