Familial ALS?

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lda8

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Hello. First let me say, thanks for letting me ask these questions here. I don't want to dwell too much on this or Google anything else but a conversation I had with my father this week has made me very nervous. We were discussing health and family history and he mentioned that his aunt on his mothers side (my great aunt) passed away at 54 from ALS. As far as I know, this is the only person in my family that has had ALS. However, my grandmother is one of three and she passed away at 78 from Alzheimers complications. Her remaining sister also passed away from Alzheimers related complications at 74. I've read that familial ALS is also associated with FTD and that it is often misdiagnosed as Alzheimers. The high incidence of dementia and ALS (3 out of 3) concerned me.

I'm trying to focus on the positives. My great aunt with ALS did not have children so no way to know if anything was passed on. My grandmother had five kids. One passed away from Sarcoidosis at 64 after battling it for many years. He suffered from severe dementia the last six months of the disease but the disease was everywhere at that point. My father and his remaining siblings are all still alive and healthy (ages 59 - 70). My father is 64 and no troubling behavior that doesn't seem to just be age related. My grandmothers other sister had three children. All are healthy and in their late 40s / early 50s. I have lots of cousins ranging from young to 40s and no other sign of ALS or dementia.

I apologize for the long post and not even sure what I'm asking. Does this seem worrying for a genetic cause of ALS / dementia or more likely an isolated case and typical advancing age Alzheimers?

Thank you so much for your time.
 
I understand what you are asking. There is no way at this point to be 100 percent certain but try to take comfort in the fact that Alzheimer's is very common so having 2 siblings get it would not be surprising.
Is it possible that there was a genetic defect shared by the 3 siblings? Unfortunately I suppose yes but there is no way to know today from what you have said. It is certainly encouraging that everyone living today is healthy. IF and it is a big if there was a defect your parent's chance of getting it would be 50-50 if he does not have it you don't. If he does then you would be 50-50. There is zero that you can do about today so your best bet is to forget about it and concentrate on living a joyful life.

It may comfort you to know that treatments and likely cure for the more common genetic defects are probably very close. I realize this is not very comforting but I do not think people can say it is completely impossible there is a genetic issue but the odds are it is not
 
I'm no doctor but for what it's worth, I see no reason to worry about more ALS in your family. Alzheimer's, maybe, but not ALS.

I see what you're saying about FTD and Alzheimer's, but I don't see a reason to stay up at night. Don't forget to enjoy life while you're living it.
 
Thank you both for replying. Google can be a very scary place and any reassurances help. I wish you all the best.
 
My paternal Grandmother died of ALS at age 60 when I was 7 years old.
My father started to show signs of dementia at age 65. He died at age 72.

The dementia had never showed Alzheimer's type symptoms or progression but none of the family or any of the doctors could tell what kind of dementia he had.

I never thought anything about FALS until I was diagnosed with ALS at age 65.
I subsequently had my genes tested for SOD1 and C9orf72.

SOD1 -negative. C9orf72 -positive. I had suspected C9orf72 and now know My father had FTD.

I would think the only way to confirm or rule out the potential for FALS is to get your genes tested particularly for the C(orf72 gene.

-BrienW
 
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