Questions About FALS

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Thompson66

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Good Morning All,

I have a couple questions regarding FALS that I wasn't able to easily find answers for online.

Background: My dad was born in 1966. He died in 2010 when I was 12.

I had been reading about it lately and found that there is like 10% of "sporadic" ALS that is still genetic. I was also reading about FTD and ALS link.

1. My grandmother on my dad's side had what we always just called "dementia" when she was in her early/mid 80s. After asking about the symptoms, it sounds a lot like Alzheimer's to me. She started off by forgetting things then got delusional and what not until the end. Is there any chance that it was actually FTD and we didn't know it?

2. Should I be worried about the genetic risk if my dad had ALS? I'm confused about such a high percentage of "sporadic" cases having a genetic link. In this case, would I want to get tested for C9 gene? Or would it be unlikely that my grandmother had FTD in the first place?

For reference, my Dad was the youngest of 4 brothers and none of them have anything wrong with them.

Thanks,
Tom
 

Nikki J

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The risk of Alzheimer’s in someone in their 80s is very high Some studies say it approaches 50 percent FTD does not usually have a primary symptom of memory loss Anything is possible but it doesn’t sound at all likely

supposedly the incidence of “sporadic” c9 is around 7 % in ALS though some of that is probably due to small families, early deaths and incomplete history.

genetic testing is not to be pursued lightly. There are insurance implications and possible job and even housing discrimination issues reported. If you choose to pursue it ( and I would not with your history) call Wash U
 

Thompson66

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Joined
Apr 15, 2021
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Lost a loved one
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01/2006
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US
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MO
Thank you for the reply Nikki

I've thought the same about what is actually sporadic vs not actually sporadic

The way I see it, if FALS is 10% of cases and C9 is somewhere on the order of 50% of that, then you probably would have <5% of people that are truly sporadic having developed the C9 mutation themselves

In your opinion, would it even be worth trying to get tested? On the one hand, I'd really want to know, but I know it can be quite the process with some of these specialized tests and it seems very unlikely anyways. It's something I worry about but I'm not entirely sure how I feel
 
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