So here is a very serious question, and looking for opinions/thoughts! My father was the 3rd confirmed case of ALS in my family on his side. Him and his two Aunts. Possibly his mother, but her official cause of death was from complications of Alzheimers. Even though she exhibited some symptoms of ALS, but it wasnt thought of too look into ALS at the time because the Alzheimers was already killing her. Thats fact 1. Fact 2, only 5% of ALS cases in the US are Hereditary, called Familiar ALS or FALS. Only one mutated gene needs to be passed on within the defective X-Chromosome from a parent. There is a 50/50 chance that this could be passed onto a child. Fact 3, there is a genetic test that can be done to determine if you have any of the 5 Known mutated genes associated with FALS. Fact 4, Only 20% of familiar ALS patients will test positive for one of these known genes. Fact 5, a negative genetic test does not mean anything except that you may have an unknown familiar gene and there could be hundreds of them that are unknown. Fact 6, a positive test means that you have received a mutated gene associated with FALS but still only have a 50% chance of ever developing any ALS symptoms. These are the medical facts. With this information, here is my question. Should I have this test done? Here is what the personal questions that need to be answered and these questions have been on my mind every minute of every day since we found out that dad had ALS. What do i do differently in my life? How would it effect me, daily living? Would you think any differently of me knowing that I will most likely, eventually, develop ALS? Does this take me out of the Prime market for ever Fathering a child with a wife that understands the chances of passing on another gene and continuing this hereditary genetic trait? Do I ever even find a wife because this would be one of those pieces of information that would need to be told upfront, kind of like an STD, you need to tell your partner. This information scares everybody! Would I be more stressed than I am now, or would I feel relieved to know and be better prepared, if there is even such a thing as preparedness with ALS? How would I handle some people getting too sentimental as though I am gonna die tomorrow? Will i become a hypochondriac and think every little thing happening to me could be the onset of symptoms? I already have muscle twitching throughout my body, but this could simply be dehydration. Its not constant but daily, and usually never the same muscle. There are a billion questions that come into play, which is why i would need a full psychiatric evaluation and genetic counseling before a lab will even except my blood for testing. I am not sure if a test like this could be more serious. And the biggest fact is, no matter the results of the test, it still does not give you positive confirmation that I will or will not ever have ALS. There is just so much mystery involved with this disease, Its heart breaking! So if you have ever wondered why somedays im so tired and tell you I dont want to do anything, or I stay in my apartment for an entire weekend and never come out, its because I have overwhelmed myself for the week, juggling a full time job, my fundraisers and my starting of a foundation, and mental exhaustion from exploring my lifes choices of the past and choices to make in the future. Im not sure if anybody could ever understand what has been rattling in my brain for 2 years, but its not the easiest stuff to deal with. Why would I want to know us also a question that I cant seem to find an answer for!
Posted on: Fri, 29 Aug 2014 08:10:57 +0000
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