EmilyD
New member
- Joined
- May 5, 2017
- Messages
- 2
- Reason
- Lost a loved one
- Country
- US
- State
- NY
- City
- Pearl River
Hi everyone.
I am new to these forums but unfortunately not to ALS. My father was diagnosed at the end of 2004 and passed away March of 2006. My grandfather was diagnosed in 2012 and passed away early 2013 (he had many other health issues, as well.) My grandfather's brother had Muscular Dystrophy (that was his diagnosis, but now we all wonder if it was ALS. He passed away when he was 29 and this is well over 50 years ago).
For the past 13 years I have not wanted to know if I carried any of the genetic mutations since this does seem to be FALS. I really wanted to just try to live my life to the fullest and not know. (I also have 3 sisters who don't want to know.) However, I have two little girls now and recently I have seriously started to consider getting tested. I know it is far too late for me to be tested against my father and grandfather, but I was considering getting the testing done anyway. My husband and I have talked about it for years and I feel like I'm at the point where I need to know. I told my husband that I have been carrying this huge weight around with me for the past 13 years of not knowing. We are actually meeting with someone tomorrow to set up a life insurance policy for me just in case I decide to get the testing done.
I talked with my mom about it and she is supportive no matter what I decide, but she thought I should try to reach out to people who have had the testing done.
I know that without being able to be tested with my family's DNA it could come back inconclusive...but really I'm looking for advice/opinions from those who have had the testing done or those who have chosen not to have the testing done.
I appreciate all of your time. Thank you in advance.
I am new to these forums but unfortunately not to ALS. My father was diagnosed at the end of 2004 and passed away March of 2006. My grandfather was diagnosed in 2012 and passed away early 2013 (he had many other health issues, as well.) My grandfather's brother had Muscular Dystrophy (that was his diagnosis, but now we all wonder if it was ALS. He passed away when he was 29 and this is well over 50 years ago).
For the past 13 years I have not wanted to know if I carried any of the genetic mutations since this does seem to be FALS. I really wanted to just try to live my life to the fullest and not know. (I also have 3 sisters who don't want to know.) However, I have two little girls now and recently I have seriously started to consider getting tested. I know it is far too late for me to be tested against my father and grandfather, but I was considering getting the testing done anyway. My husband and I have talked about it for years and I feel like I'm at the point where I need to know. I told my husband that I have been carrying this huge weight around with me for the past 13 years of not knowing. We are actually meeting with someone tomorrow to set up a life insurance policy for me just in case I decide to get the testing done.
I talked with my mom about it and she is supportive no matter what I decide, but she thought I should try to reach out to people who have had the testing done.
I know that without being able to be tested with my family's DNA it could come back inconclusive...but really I'm looking for advice/opinions from those who have had the testing done or those who have chosen not to have the testing done.
I appreciate all of your time. Thank you in advance.