Hi guys,

long time lurker, first time writing.

I am almost 32 and at risk, and lately I have been so anxious and worried about having HD.
I am experiencing strong myoclonus when going to bed (it does not happen during the day). I have to say it does not happen often (it happened yesterday, and the time before it was, I guess, 2 weeks ago).

I think it started with my legs a few months ago, but lately it happens to my arm/s or shoulder/s.
I don't know, I was ok with that, I was thinking it was just some benign sleep myoclonus, but this last episode really freaked me out, mostly because my arms really "jumped" with a wide and quick movement (imagine almost trying to defend yourself from an unexpected punch).
It happened during a nap after lunch, the night before I exercised a lot in the gym (arms/shoulders), I don't know it this could induce the myoclonus. I would not be that worried normally, but reading on the internet about myoclonus, every page I read just screams "HD" back to me...

I have to say I haven't experienced any other symptom except this anxiety that sometimes really affects my everyday life. I have barely eaten since yesterday, I really don't feel hungry at all. I don't know if I should take some medication for anxiety.

I have no one to talk to about this. My brothers decided we won't discusse HD between us, and I don't want to make my mother suffer while it is not sure at all I have HD, she's already suffering enough and having enormous patience with my sick dad, so I am sorry for this message, maybe it seems a little bit rambling but it is the first time I am writing my feelings down so forgive me

I am scheduled to leave my country in a couple weeks (my decision), going back to a city where I lived in the past and that I love, but right now, being anxious already, I am feeling scared of getting sick alone and far away from my family, and this is making me more and more anxious. I really don't know what to do, I guess I am too scared to take the test right now.

Any advice would be greatly appreciated, and thank you for reading

Hi Bai. I’m not sure what the ‘no discussing HD’ rule is achieving, except to make you even more anxious. And are you moving away from your family to save them having to deal with your fears or saving you from dealing with their fears? Either way it doesn't seem to be helping you. I know that living near family doesn't mean you'll get their undivided attention or support, but moving location certainly doesn't remove the problem and could isolate you even further.

There was a very wise person here who wrote that when the anxiety of not knowing becomes greater than the anxiety of possibly knowing then it's time to maybe rethink how you are approaching testing and HD.

I'm glad you posted here. It's clear that you do need someone to talk to.

Thanks for your answer Itchyscratch,

I would like to point out that living abroad has nothing to do with HD. It is just me, not fitting in a small-town mentality city, and loving other countries a lot more than mine. I came back home a few months ago (well, the European crisis did not make any easier to land a decent job), but never stopped dreaming about leaving again.

I have known being at risk for 7 years but it did not affect me until recently (probably because I wasn't feeling sick, I wasn't symptom hunting, I did not have any myoclonus...).
It wasn't running away from the problems back when I left for the first time, and it won't be now. Only now I feel like it is going to be a problem to leave, now that for the first time I am really scared about getting sick. Sorry, the first post was really a rant so I reckon it is not so clear
And the "not discussing HD" rule unfortunately is not my idea...

Thank you for the "wise person" quote, it makes a lot of sense

I really hope someone could explain me about the relationship between myoclonus and HD, especially because I read it is often associated with Juvenile HD, and with "action" myoclonus rather than sleep ones, so maybe I am getting too much worried about all of this. Anyway, I surely had to talk/write about it, you're right about that. Thanks

I am at risk and my friends who are not all have these myoclonis movements at different times and they sometimes just go away.

I am at risk and my friends who are not all have these myoclonis movements at different times and they sometimes just go away.

It is difficult to know what is causing your symptoms. However the older you get you might become more anxious, thinking that if you do carry the gene it will begin to manifest itself.
In our family, testing was delayed until it became obvious that not knowing was interrupting life decisions and choices. It is hard to go forward not knowing where you are headed, how to plan for the future. If the fear is blocking you then it might be time to see a counselor who understands this fear. Your anxiety could be related to the movements, it is fearing the unknown. It is a difficult decision to test but remember you have people here who do understand whatever you choose to do.