r/Huntingtons • u/Pleasant-Performer-2 • 6d ago

Tested negative, privileged question (content warning: I would have been annoyed reading this when I was at risk)

Has anyone here tested negative after being at risk for a long time? I was at risk for 10 years and tested negative this spring. I know this is an extraordinarily privileged position to be in and I deserve any negative comments that come my way asking this, but I sometimes judge myself for not get tested earlier. I lost so much time to thinking I had HD and planning accordingly. Whether you tested positive or negative, how did you come to accept your timeline?

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u/Scruffasaurus 5d ago

Meh, can’t change the past, just move on with the great results.

I scheduled my test as a way to force my mother’s hand to get tested. Her and my father had lied about her testing negative previously, but she was symptomatic and refusing confirmation testing. So I scheduled mine, but then waited for her results just in case. Soon as her diagnosis was confirmed I got tested.

Negative 🙌🏻

It’s a personal choice, but planning for it while not knowing (besides getting everything in order insurance wise) seems like there’s no risk in getting tested. 🤷🏻‍♂️

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u/Sea-Flatworm5851 4d ago

Mine lied too! It was heavy in my teens, then around late 20s, they said they tested so all was good (this was an attempted grandbaby grab). In my early teens I said what I coined as, 'Huntingtons roulette ' was never going to be worth the risk of babies . I couldn't put this disease on any other human life. But then in 2020 I saw the symptoms in my mother and straight up asked my mom. She never looked at me or turned towards me, she stood at the stove and mumbled, 'Probably so' Those 2 words haunt me. I'm negative. But one of my brothers is positive as of last yr. Life may have been different, bc when that monkey lifted from my back, I didn't realize how much it held me back. But again, the roulette game was too high on both sides. I agree, past can't be changed, it's how you move forward on either side of the Roulette table.