Cris R
Member
- Joined
- Nov 28, 2013
- Messages
- 14
- Reason
- Loved one DX
- Country
- US
- State
- DC
- City
- Nottingham
Hi all and Happy Thanksgiving!
I have a question for some of the forum members here and was wondering what your opinions are on this matter.
My father was just diagnosed with what neurologists consider to be "sporadic" ALS. My father has a long line of medical history on his side of the family and there is no sign of ALS on either his mother or fathers side (my grandparents).
My father is 58 and the neurologists that diagnosed him are from the University Of Maryland and Johns Hopkins. My parents asked them a few times if my brothers and I need to be concerned about inheriting this disease from my father.
Both teams of neurologists have told them that we do not need to worry and that they all agree that my fathers case is sporadic. They do not suggest at all with going forward with genetic testing.
However, I've made the mistake of digging deep into the internet for answers to questions and further information. BAD IDEA! I should have just been content with the neurologists diagnosis but it wasn't good enough in my mind.
My question for you is, should I force my father into a genetic test to see if there is a chance he passed along any of the known genes associated with ALS to myself or my brothers? I know that if he did, it wouldn't matter anyway. There is no cure and I should just live my life and enjoy the time with my father.
HOWEVER, I have two small children. Obviously with no family history of this disease. we've never even thought of being genetically tested for abnormalities of such a rare disease to begin with. So I never had any second thoughts of passing something along to my children.
My concern is for my kids. If my father had incidentally passed along a bad dominant gene to me and my brothers, then there is a good chance I passed it along to my children. If this is the case, I would want them to know that if there is a chance they have this dominant gene which they could inadvertently pass onto their children. At least they would have a choice and know ahead of time.
Or should I just take the advice of the neurologists from some of the best hospitals in the world let along the United States? You know, because my brain is telling me that I know better than they do.
BTW, I hate the internet sometimes.
I have a question for some of the forum members here and was wondering what your opinions are on this matter.
My father was just diagnosed with what neurologists consider to be "sporadic" ALS. My father has a long line of medical history on his side of the family and there is no sign of ALS on either his mother or fathers side (my grandparents).
My father is 58 and the neurologists that diagnosed him are from the University Of Maryland and Johns Hopkins. My parents asked them a few times if my brothers and I need to be concerned about inheriting this disease from my father.
Both teams of neurologists have told them that we do not need to worry and that they all agree that my fathers case is sporadic. They do not suggest at all with going forward with genetic testing.
However, I've made the mistake of digging deep into the internet for answers to questions and further information. BAD IDEA! I should have just been content with the neurologists diagnosis but it wasn't good enough in my mind.
My question for you is, should I force my father into a genetic test to see if there is a chance he passed along any of the known genes associated with ALS to myself or my brothers? I know that if he did, it wouldn't matter anyway. There is no cure and I should just live my life and enjoy the time with my father.
HOWEVER, I have two small children. Obviously with no family history of this disease. we've never even thought of being genetically tested for abnormalities of such a rare disease to begin with. So I never had any second thoughts of passing something along to my children.
My concern is for my kids. If my father had incidentally passed along a bad dominant gene to me and my brothers, then there is a good chance I passed it along to my children. If this is the case, I would want them to know that if there is a chance they have this dominant gene which they could inadvertently pass onto their children. At least they would have a choice and know ahead of time.
Or should I just take the advice of the neurologists from some of the best hospitals in the world let along the United States? You know, because my brain is telling me that I know better than they do.
BTW, I hate the internet sometimes.