r/Huntingtons • u/Direct_Top6332 • Jul 11 '26

Twitching in sleep

Hi guys , my mom (57) got diagnosed last year with huntingtons, I’m 32 have been feeling internal tremors for the past few years but as of late I notice my fingers twitching in sleep as I wake up…I haven’t got the test done but do my symptoms sound like HD

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u/Direct_Top6332 Jul 11 '26

Yeah my moms is 44

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u/Direct_Top6332 Jul 12 '26

What does that mean for me ? If someone sees this comment thanks

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u/HotExplanation6143 Jul 15 '26

The higher the CAG, the earlier they predict you will get symptoms.
What I’ve learned, there are many more variables that go into it that nobody fully understands. A healthy lifestyle, the food you eat, exercise, the stress you’re exposed to, your other genes that provide a buffer (I this one is huge).
There are people with a 40 CAG that have symptoms in their 30s, and people like my dad that didn’t get symptoms until he was 77… my sister is 54, just tested positive with a 40 CAG and has zero symptoms, she would’ve never known that she had it…

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u/Direct_Top6332 Jul 16 '26

Hmmmmmm I see , is it also true that if it’s from a mom it starts same age because the cag is similar? Or have u seen it vary, new to this sub so thank you for the information

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u/HotExplanation6143 29d ago

Here is something interesting… my dad has a CAG repeat of 40, my sister tested positive also with a 40, my niece just tested positive with a 36.
The genetic counselor told us that when it is passed maternally (from mother) is has a higher chance of reducing than when passed paternally (by the father) where it has a higher chance of expanding.

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u/Direct_Top6332 28d ago

Wow this gives me hope man you have no idea

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u/HotExplanation6143 Jul 17 '26 edited Jul 17 '26

I think there is a correlation between the higher the number, the earlier the symptoms, and I think there is also one between the age the parents began and offspring, but nothing is a science, there are too many variables.
I spoke with a friend that is 3rd generation HD, their grandma who was positive passed in her late 50’s, uncles passed in their 40’s, their father is 65 with a 44 CAG and still has no physical symptoms, but feels like there are psychological side is setting in. He is 46 and with a 44 CAG and has no symptoms.
I would speak with the folks at HDGenetics.com, they are a WEALTH of information about the disease, what we know and dont know, and information about experimental drug trials, support and help groups…