ALS Familia question

[Texans 2014]

My PALS was diagnosed in Sept 2011. I am not aware of anyone else in his family that has or had ALS. His mother passed a year and a half ago and a family member came across an old letter that she had filed away about a family member who had died showing some symptoms of ALS probably 75 years ago. They shared that info with our adult children who are now somewhat concerned.

My question is whether or not there is a medical test to rule out if someone carries the ALS Familia Gene or not. If so, does the person with ALS take the test or do the children?

Thank you in advance.

 

[affected]

Nikki can answer this really well but if it is familial you would know as normally there are many close relatives affected. Either your PALS mother or father had to have the gene and unless they died suddenly from something else, they would have developed ALS. If neither parent had the gene, your PALS can't have.

So maybe someone with some ALS symptoms 75 years ago does not make this familial.

Genetic testing is quite expensive as there are a lot of different genes to test for. The PALS would be tested.

I am no expert on FALS but I can't see you have any reason to suspect it.

 

[Nikki J]

Suggest you watch this webinar. https://www.neals.org/for-people-wi...inars/a-users-guide-to-genetic-testing-in-als

Now it is true if this is FALS the people in the connecting blood line must have been carriers for your PALS to have it. The more distant the connection without other cases the more unlikely this becomes. If many of these people died young or had other neurodegenerative diseases it is somewhat more likely. And it sounds as if the other case is far from definite. Coincidence occurs as well. One of my FALSrelatives has ALS on both sides of the family ( one is clearly FALS confirmed by genetic tests, the other is almost certainly SALS) If that person got ALS someone on the SALS side might conclude they were FALS when in fact they are not

If testing is desired/ indicated it is the PALS who must be tested. There are tests for about 60 percent of FALS at present. There are families that are clearly FALS- multigenerations, multiple people affected each generation that have no identifiable genetic defect. After you watch the webinar talk to your neurologist to see if this is worth pursuing. Genetic testing is less expensive than it used to be but is not inexpensive. Since it is the PALS who needs testing if it is a concern it needs to be done in a timely manner