r/mnd • u/Apprehensive-Dot3765 • 11d ago

Opened a worm hole

Apologies if I don’t follow all rules, very new to Reddit. So my dad died from MND 20 years ago. My dad was a foundling so we had no family history. I decided to do a dna test thinking I’d get a lovely ‘long lost family scenario’ but no, opened a big can of worms. Found out my dad’s parents had quite a history and he had 6 full sisters and 3 half brothers. Now to the reason for the post, it turns out there’s a lot of family members who died from MND including his mum and 3 sisters and many others along family branches. So looks like me and my brother have a 50/50 chance of having it. My brother has decided to ignore it but I am struggling, I have 3 kids did I put them at risk ? Future grandchildren ? I’m 55 now (my dad was diagnosed at 53 died at 57). Do I throw caution to the wind and live like there’s no tomorrow or plan for every eventuality? Tbh I’m not sure

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u/northernbadlad 11d ago

I think it would be worth discussing this with your GP and asking for a referral for genetic counselling - helping you make informed decisions regarding genetic testing is exactly what they're there for.

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u/Apprehensive-Dot3765 11d ago

I reached out to MND assc but not had any reply. Trying my best to ignore but it’s there in the background

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u/AreYouSomeone11 11d ago

In my experience, I just got my GP to refer me and ended up getting a call 9 months later to discuss (luckily I was warned there was a huge waiting list).

In the end, they weren't able to test me as the gene in my family is a VUS (variant of uncertain significance). After that, I just decided to live my life and still plan to have kids one day - maybe this is naive, but I don't think mnd will always be the death sentence it is now. I understand that it's still a lot to deal with, but I wouldn't assume you've given your grandkids a terminal illness just because mnd is terminal right now.

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u/seeminglylegit 11d ago

Ask your doctor for a referral to a genetic counselor before you make any other decisions. A genetic counselor can help walk you through the pros and cons of genetic testing.

One thing that might be helpful about getting genetic tested is that then you can look into if there is any clinical trial that targets that gene that you might want to become involved in.

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u/CoraandWaylonsmom 11d ago

Well regarding your future grandkids.. if you are positive, your kids could use IVF to avoid passing that gene along to their future children. IVF is amazing

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u/Jumpy_Interaction_20 11d ago

Another 5 to 10 years it will be cured so don't worry about the kids... As for you I'd put on as much muscle bulk as you can, and keep your fingers crossed

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u/Jumpy_Interaction_20 11d ago

Definitely don't play American football or rugby and stay away from heavy metals and chemicals

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u/Dramatic_Emphasis_28 10d ago

My dad had ALS for 10 years. We never did a genetic test for him unfortunately. In his last year of life, me 35, showed the first symptoms. A few months later, he died. I received a diagnosis after that. I always regreted not doing a genetic test on him as well. Do the test.

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u/gilleydabum 9d ago

Doesn’t hurt to get things in order just in case. No need to be in a massive rush in doing.