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ruby36

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My ex husbands mother died of ALS in 2003 and a few years ago I found out that my ex husbands brother was diagnosed with ALS as too. When I heard the news, I really thought that he was misdiagnosed. He's only 43 years old and I was in total denial. Having said that, communication has not been the best between my ex's family and I just recently found out that my ex brother in law is having a hard time walking. So, denial is not an option and the reality is, ALS is familial in my sons case.

I have done my research and I understand that my ex has a 50/50 chance of getting it. Even if the gene was passed on to him, it doesn't mean he will get it but my son, who is 16 years old, wants to have genetic testing done to see if he carries the gene. While I have mixed emotions, I respect his decision and I will support him.

My question is, does anyone know how I would go about getting him tested? Do I just make an appointment with a doctor and ask the doctor to order the test?

If anyone has any knowledge of FALS to share, I would be grateful.
 
Something you will want to discuss with your doctor about having this test is if it comes out positive and he has the gene he will have a very difficult time getting health, life and disability insurance. It is something you will want to think about extensively. As there is nothing that can be done once he finds out either way you will want to be aware of the consequences. Just something for you to think about.
 
Hi Ruby
I am so sorry. You must be terrified for your son. We are a FALS family too so I understand what you and your son are going through.
VoiceforLinda is right. Practically a positive test could have a terrible impact on future insurance coverage and there is nothing we can do right now to prevent the disease. I would worry too about the impact of a positive result on such a young man.
I understand that you are estranged from your ex and his family? If there is any way you could find out it might be helpful in the future to know if your exBIL has an identified gene (they have not identified a gene in all FALS families).

If your son insists on pursuing this you would probably need to go to a genetic counselor. ALS clinics and neurologists order the tests for ALS patients but I don't think they would do so for a minor who has no symptoms. You could call your nearest ALS clinic and ask if they could direct you to one.

Would your son want to come here and talk about this? There are several of us who are from FALS families
 
In looking at the F B Fals support group, someone mentioned "Athena Diagnostics" G o o g the name
 
Thank you for all of your replies!

My ex and I aren't really estranged. We are still on good terms the problem is, is that he and his family are really prideful. For example, when my ex's mother was diagnosed she was already wheel chair bound and she refused to share any information with her family about what she was going through. What happened in the exam room, stayed there.

This is something that I have been thinking a lot about and I know that if we decide to go down this road, my son will need to have some sort of therapy, regardless of what the test shows this will affect him for the rest of his life. I didn't think about this effecting his chances of getting insurance...uggg there are so many reasons why he should or shouldn't find out. I think therapy is definitively the first step.

Nikki, may I ask how your family has dealt with FALS?
 
Hi again Ruby
We are also quite new to the concept of FALS. my aunt had it and we believed it to be sporadic. her 2 sisters (my mom and other aunt) had/have other neuromuscular disorders that until my sister's diagnosis I thought were just bad luck now we are being told they are probably from the same genetic defect.
We are either grown ups able to decide testing for ourselves or younger children who are too young to comprehend fully the ramifications.
Personally I am leaning toward not being tested a there is nothing I can do about the result. It does radically alter one's world view and has made me look very hard at my priorities in life!
Can you ask your ex to find out if his brother had genetic testing and if so what was the result? That is a very reasonable request under the circumstances
good luck
Nikki
 
I don't know what kind of health insurance you have, but genetic testing through Athena Diagnostics costs between $13,000 and $14,000. My second neuro wanted me to have this testing, but the insurance did not cover it, so the cost was prohibitive in my case.
 
Thank you Nikki for sharing your experiences. My son will be a legal adult next year and whatever he decides to do, I will support him. It's a tough decision to make but in the long run, it's not my decision. He will be 18 years old next year and as much as I want to call the shots, he will be the one to make his own decisions. As the wiser, It's my duty to give him the tools to make a concrete decision...if he decides to listen to me is another story.

Old Dog...the base rate of genetic testing for FALS is $300-$500. If Athena costs that much, obviously I will have to do some shopping.

sadiemae, thank''s for the link. I joined the group.
 
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