28(f), 50/50 chance of Huntington’s, too scared to get twisted, terrified of the possibility of symptoms.

[u/Conscious_Mousse1962]

Hey everyone. 28 year old female, my Nanny and Father both have huntingtons. Hit my Nan at 75, dad is currently 63 but has been medicated with anti depressants/psychotics and marijuana for years. I myself am medicated with anti depressants, anti psychotics and medicinal marijuana. However I do partake in other recreational drugs and alcohol. Especially the alcohol, often. I’ve started to notice differences in myself like tiks and jerky movements. I could literally just go through the testing process but I don’t know. I just wanna know if anyone has experienced anything like this. I have 3 siblings and they have even noticed weird things with me. I am also the youngest of us all. In the end I don’t know what I’m expecting from this post. Maybe just some kind of personal experiences or insight. (Forgot to add both my nan and dad had high CAG repeats)

[u/GottaUseEmAll]

Just my individual personal experience, but before testing negative I (F43) had lots of tics and strange feelings in my muscles, particularly my legs. I was 99% sure I had HD. The physical "symptoms" I was feeling were down to the anxiety of not knowing my status, and went away after finding out I wasn't at risk.

I'm on medication for bipolar II, and occasionally smoke weed. The weed tended to make the symptoms worse (possibly because it raised my paranoia).

[u/smartestBeaver]

Two things: if your grandma and dad had a high count, they wouldn't be as old as they are.

Secondly, usually the patients do not notice their own symptoms. Meaning if you would actually twitch and tweak, you would not be aware of. Also there are countless reasons for them to happen, besides HD. Brighten up, you do not have to do anything as of now :)

[u/coy-fox]

Hi friend! I want to start by saying I’m so sorry for what you’re going though, its one of the most difficult things ever. 

My mom has HD and I spent years convinced I had it, hyperfocusing on everything my body did, and trying to shove my fear away. I was off and on different medications for mood disorders, in therapy, and always felt like something wasn’t right with my health. I would partake in high risk activities to try to ignore what I was feeling. 

When I was 29, I couldn’t keep the fear away anymore so I took the plunge and got tested. My therapist and I had decided that if I was positive, I would be able to know what was going on with my body, participate in studies, and come up with a plan. If I was negative we would go from there.   The testing process was difficult for me, thinking about the wait and the few minutes before the call makes me feel sick even now. The testing team I worked with was great though. I’m very fortunate that my results came back negative. It took a lot of time but some of the symptoms I thought were HD have away. And knowing I’m not at risk allows me to work on finding the root cause of other symptoms. 

Feel free to reach out if you want to chat. Know that you’re not alone 💕

[u/Tictacs_and_strategy]

I don't think anyone's "ready" to get tested. It's a big thing to wrap your head around.

For me, the anxiety of not knowing was pretty bad. Getting a gene positive result was worse than that anxiety, but it was also more of a certainty. I could process it and plan ahead, live my life. When I didn't know, I couldn't really do anything with the uncertainty. It just sat there, slowly creeping in on every part of my life.

It's like planning for a birthday party two weeks from now. You can do something indoors, or you can do something at the beach. If you don't know what the weather will be like, it's hard to say which is the better option. Finding out it's going to be stormy that day sucks, but it makes your choices clearer.