Should one still get genetic testing even w/o family history?

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Yaga

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Learn about ALS
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Mid 20s student here. I have a very brief question. If you see my post history, you'll see that several years ago I had Brachial Neuritis. My neurologist at the time told me that the disease doesn't:
1. increase risk of ALS
2. Turn into ALS

I have since recovered from Brachial Neuritis.

What I haven't gotten clarified, is whether I should get tested to see if I'm genetically pre-disposed to sporadic ALS. I have no known family history of it, but was worried that one could be born with "dysfunctional genes" that could trigger it later on at an older age...(40s, 50s, 60s, etc.).
 
short answer no.

Long answer you don’t have ALS or family history. There is no reason to suspect you are likely to carry a FALS mutation.

longer answer even for people from known FALS families genetic testing isn’t a given. It isn’t really actionable as there is no prevention for carriers with the exception of a carrier trial for SoD1 that only accepts those with aggressive variants and those people have strong family history. In addition genetic discrimination is real and just the testing process could have implications for you with insurance and other things.

please go live your life. You have no reason to feel the shadow of ALS hanging over you unlike my family members. Rejoice
 
Thank you so much for your response :) I don't mean to be an inconvenience, but just to clarify...is it also possible for one to have dysfunctional genes making one predisposed for sporadic ALS, (i.e. being born w/ dysfunctional C9 or SOD1 gene)?

In some of the clinical studies, it was stated that C9 and SOD1 gene mutations were found in patients of sporadic ALS as well...hence my concern :(
 
Is it POSSIBLE ? Yes spontaneous mutations can occur during conception. so if someone is diagnosed with ALS genetic testing is reasonable. You are not. If you want to spend money to get genetic counseling, badger them into ordering testing insurance won’t cover ( they wouldn’t even cover mine even though I had documented c9 in my immediate family because I was asymptomatic at the time) and risk genetic discrimination no matter what the results ( because insurance companies will wonder why you tested) go for it.
 
If you still have questions, your best next step is to make an appointment with a genetic counsellor. They can step through your situation in full detail and help you.
 
My apologies @Nikki J it seems I've upset you. It's just a very scary thought, b/c of how unpredictable this disease is. I've been trying to exercise regularly of late, but then I'd read online that exercise increases one's chances of getting ALS.

So, my sincere apologies, I really didn't mean any offense. It's a scary thought that I could do everything right (eat healthy, exercise, not smoke, etc.), and still have some gene that might screw things up. Most scary is that symptoms wouldn't even begin to show themselves till many years later...that is, there's no age where I can go "phew, if nothing's happened by this point, then I'm good." So, all in all, the uncertainty is just hard to bear with, even though I have no known family history of this disease.

I truly wish you and your family the best, and will keep you in my prayers :)
 
Exercise increases the chance of getting ALS??? That's a new one.

It is entirely up to you how you live your life. Live in fear over nothing, or be grateful for the health and life you have today. That's your choice.
 
I am not upset but sad you are wasting energy on this.

the exercise evidence is very nebulous. There was a paper a couple of years ago that suggested exercise might precipitate a younger onset for people with my mutation. This caused a huge uproar in the c9 community and we actually had an online event where the main author spoke with us. He recommended not changing exercise patterns even in those who are documented c9 carriers.

as far as general ALS and exercise the professional athletes are mostly considered to be from repetitive head trauma and in one case heavy pesticide exposure on their playing field. Otherwise there have been anecdotes of marathoners but no definitive link. Please exercise your lifetime risk of dying of either heart disease or cancer is about 1 in 3. Exercise can protect you. It can also help protect from Alzheimers for which your risk is 1 in 8. Your risk for ALS in your lifetime is over 1 in 400. Lifetime risk. Your current risk is 1 in millions
 
You have now been trawling here for 6 hours.

Please, go see your doctor as you are going back down a rabbit hole for no valid reason.
You should not be living under this shadow at your age. You can get help, I promise that if you just talk honestly with your doctor. Print this whole thread out and take it with you and show your doctor.
 
@Nikki J thank you very much for your patience in addressing my concerns. I wish you and your family the best from the bottom of my heart :)
I certainly still have my concerns (1 in 400 being quite surprisingly high...as I understand it's 1 in 250 for men[I'm a male]), and the scary stories haunt me (commercial link removed)

However, like what @affected has said, it really is best I set this aside and move forward. I think people on here have better things to do than to assuage fears of someone with mild hypochondria lol, and understandably so. You guys are fighting the battle of a lifetime, and I think I'm wasting your time with my...understandably inane line of inquiry.

I'll keep you and your family in my prayers @Nikki J :) Godspeed!!
 
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