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nwalk

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Hi & thanks for reading. Two of my Dad's first cousins have passed away from ALS. These cousins weren't siblings of each other. None of their parents (ie my Dad's aunts & uncles) had ALS. My Dad has been having trouble with his thumbs (they are kind of cramping up) and he now has reduced movement. I have read a lot about ALS and am now petrified. Both of my Dad's parents lived into their 80's and didn't have ALS. Can the genetic form bounce around like this or is it generally passed through direct parents? I really appreciate your help on this one.
 

Nikki J

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hi I am sorry that ALS has touched your family. If this is FALS then yes your grandparent would have had to have the gene to pass it to your dad. BUT I am told that there are cases with people with a defective gene living healthy lives into their 80s. (at least with my family gene which is c9orf72) this is supposed to be rare but possible. also our particular gene can cause other neurological diseases and dementia

sorry this is not reassuring. good luck I hope it turns out to be arthritis or something!
 

nwalk

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Thanks for taking the time to respond. I have done a bit of further research and the two cousins that my Dad had who have both died from ALS didn't (as far as we know) have parents who had the disease (they lived into their 80's). I know that my Dad's grandparents on this side of the family lived into their 70's and did not die from ALS also. So I am wondering if this still suggests we have ALS in our immediate family? Most of the info on the internet suggests that when it is in the family lots of members are affected. I am still really worried and when I ask Dad about his hand he just blows it off and says that he is fine.
 

Nikki J

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I hope your cousins are just an awful coincidence and yes there are lots of families who can trace back lots of cases.
However our family is definitely FALS with an identified gene. noone in my grandparents' generation had any signs of any neuro illnesses and lived into 80s and 90s nor can I find anything in previous generations all lived to hale and hearty old ages. But then it hit my mom and 2 of her sisters and now my sister too. I don't know if the gene was dormant all this time or if there was a mutation in their generation. there is higher incidence in the military and her maternal grandfather was in WWI and exposed to gas warfare. Wish I knew the answers
Good luck
 

asantiago

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We are a FALs family as well. My grandmother's mother died from ALS then my grandmother lived to be 73 and died of congestive heart failure with no symptoms of ALS. Then my mom ended up with it. So my grandmother had to have the SOD1 gene mutation in order to pass it to my mom but she never developed any symptoms of it and none of my grandmother's siblings ever showed symptoms of ALS.

Just a year after mom died her brother started developing symptoms.

Not what you were wanting to hear but yes, it could be familial. That would be a crazy coincidence to have two family members have Sporadic ALS although not impossible.

I had no idea what ALS was until my mom got it, I knew my great grandmother died from Lou Gehrig's disease but I had no idea what that was. So it seemed to skip an entire generation and now is striking my mom's generation.
 

nwalk

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Thanks for your reply. And I'm sorry about your Mum & your family. All this is new to me and I am just starting to look into it - so all of the information on the internet is a lot to take in. I think I need to find out a little bit more about my Dad's cousins who passed away. It would appear in our situation that it has skipped two generations (ie. my great grandparents - who died of other causes in their 70's) and then my Great Aunts and Grandfather on that side (as they all lived into their late 80's & 90's). It is one each of my Great Aunt's children who have lost their lives to ALS. In a lot of the familial stories you read is seems more direct down the line - I guess not a lot is still known about this disease by the looks of it. I know the male cousin of my Dad that died seemed to have this illness for many, many years. The other cousin (a female) progressed very quickly.
 

asantiago

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Yes, ALS is such a mystery in so many ways. My mom's grandmother lived for many years in a wheelchair, my mom lived only months after onset and her brother is coming up on two years with it (I think 2 years I lose all track of time) so everyone can be so different. I really hope its not ALS!
 
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