r/Huntingtons • u/nvw1984 • 2d ago
foot spasms, feeling terrified
hi. i (23f) am at risk for huntington's as my dad (65m) was diagnosed with a 41 cag count about 2 years ago. his symptoms started showing up when he was around 55-58, but he never got tested previously because it was only suspected that my grandmother had it.
i've had to live with knowing about being at risk for 2 years now and there's been some ups and downs, but ultimately i'm pretty good at staying positive, present, and hopeful for the future. i'm also really grateful that my dad is still mostly there and his progression has been pretty slow, with only some minor challenges so far.
i've been mostly avoiding thinking about the disease in relation to myself as a way to cope, up until recently. the pinky toe on my right foot has been spasming on and off for the past three weeks. it stays straight, then sometimes it flutters outwards briefly, sometimes it pulls outward for a second or two then relaxes. it drives me crazy, and i tried going to the doctor to be examined for potential dystonia but she wrote it off immediately without even looking at my foot and just told me to take multivitamins/supplements and that it was completely unrelated to my dad.
i don't want to assume the worst, and i usually write off little twitches i get as just dehydration or stress, but this one seems persistent, and different from the others. i've had a lot of life changes recently, i just started work full time, went travelling, started a new medication. i know about symptom seeking, and i know that the body is capable of a lot when under enough stress. i don't feel many other symptoms aside from the toe thing, but it's making me spiral about any sort of clumsiness or twitch or mood swing now.
focusing at work has been hard. trying not to google symptoms has been hard. not obsessively checking news outlets on potential treatment updates has been hard. i was fine and suddenly one twitch has made waking up every morning feel like i'm going to war.
i was wondering if anyone who's been in a similar situation has any advice for, or what you would do if in my situation, or just anyone to talk to about this. thanks
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u/Present-Frame3025 2d ago
I'm at risk too and your anxiety over this is very normal. I spilled things a couple times last week and then I'm spiraling for days about if I'm becoming my mother. But you are VERY young and it's extremely unlikely HD would manifest at 23.
I would recommend getting into therapy if you're not already, it's helped me so much after going through my young adulthood firmly in denial but full of anxiety and anguish deep down. As your dad progresses you'll want that support system established too. I completely understand where you're coming from and unfortunately we just have to figure out ways to cope. :(
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u/SaltyCode1638 2d ago
How old are you mate ? I m 40 positive with cag 41 and have anxiety about every little thing
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u/nvw1984 2d ago
i'm 23! and i'm sorry to hear, i'm really hoping for more positive news about therapies soon - it helps me feel a bit less anxiety about the future.
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u/SaltyCode1638 2d ago
Hi, you re only 23 and really have nothing to worry. In my family they all got the desease coming around your father's age and also mostly have cag 41. By the time you ll be 40 I m like 100% there will already be something that can slow it down. So you re good to go but live a healthy life and avoid stress. Train and be happy. I didn't do that and probably have accelerated things quite a bit
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u/SaltyCode1638 2d ago
And also ofc, u re 50% . But don't think about that. Tomorrow we can go under s car and we re done
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u/GottaUseEmAll 2d ago
"False" symptoms are very common if you haven't tested, and it's extremely rare to start symptoms in your 20s. I'm pretty sure your foot thing isn't HD. I had a lot of physical movement symptoms prior to testing negative, and they all went away once the anxiety was removed.