Encouraging News

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ccraig1771

Member
Joined
Oct 5, 2015
Messages
19
Reason
CALS
Diagnosis
09/2015
Country
US
State
CA
City
Eureka
I had to start a new thread because the old one was closed. My original post was about my concern that my mother's ALS was Familial. I had received word that my Aunt may have ALS as well. However today I received a call that she doesn't have it and has 5% chance of getting it. (This is the standard 5% to 10% that we all read about) So I am extremely happy. The one thing that my mother held onto until she passed last month was that this was not hereditary. So for now I will go on living my life because that is what she wanted. I will try to be the wonderful loving mother that she was, and I will remember her everyday and smile.
 
Thank you for the update. I am happy to hear this as I have wondered. Where does the 5 percent come in? I don't know of any scenario that gives a person 5-10 percent chance?? FALS is much higher. Everything else is lower??? Or are you saying 5-10 percent of ALS is FALS? That does not mean that any case of apparent SALS where the family history is known has a 5-10 percent chance of really being FALS. I think the majority of FALS families know all too well they are in the 5-10 percent of FALS.
 
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Yes, Nikki, I think you are interpreting the 5-10% correctly. Clearly as you say, that is way above the overall risk:

The lifetime risk of MND, adjusting for competing causes of death, was 1 in 472 (2.1 per 1000) in women and 1 in 350 (2.9 per 1000) in men.
 
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