To test or not to test THAT is the question

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Distinguished member
Mar 23, 2009
Recently I feel compelled to go be tested for the SOD1 mutation. It has been identified as the cause of familial ALS in my family. Initially I was adamant I didn't want to know. lately I feel like I just have to know, its eating me up.

I know that a positive test doesn't mean 100% I'll develop symptoms.

I just waste so much time wondering if and when it will strike me. Which given a positive test I would still worry and worry even more I am sure. I have just been operating life as if I will get it and its only a matter of time when. Having said that I know I would still be devastated of course with a positive result.

I guess I'm just needing to talk about this with someone and not sure what to do. In the end of course I am just hoping it will be a negative result which would bring immense relief to me as I agonize over it more than I should. Particularly from the standpoint of my children who are 1.5 and 4. My primary concern is leaving them and what would happen to them.

There are times when I think I may want another child but knowing I may be a carrier definitely weighs into that decision in a huge way. Not only from the aspect of passing it to a child but also from the angle of dying young and leaving young children without a mom.

I can be an impulsive person and just want to be sure I've thought this all through. What kinds of regrets could I have from doing this?
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