Hi, I'm worried that my boyfriend has early symptoms of HD. He is 30 years old. His fingers are moving when he is relaxing, it's like he is lifting one of them up randomly. It's not in any kind of pattern or continously but one at a time. I don't know if this could have anything to do with the fact that he has essential tremor, but he doesn't shake when he sits still, only when he moves. He also twitches a lot when going to sleep, more than anyone else I know, and complains about being restless. He can get annoyed really easily but he's not mean in any way.
His grandfather had HD, his mother is now in her mid 50's. She hasn't got any clear symptoms, on the other hand she hasn't been to a doctor since she stopped having kids. I saw her drifting off to sleep the other day and she had some movements in her hands and arms. She was opening and closing her hands, and then lifted her arms straight up. She also had twitches in her face. She is moving her hands a lot while being awake, but it doesn't seem involuntary, and she can hold them still. She seems to be obsessing a bit about things, and almost a bit hypomanic, but she is very nice and is not aggressive or anything like that.
Could these be symptoms or am I overreacting?

Welcome Mary. Sorry none of us have posted a timely reply. You will find caregivers and those with HD here that are willing to help.

In regards to your question, there isn't really a good way to answer. It could be HD or it could not as you know. Although the background is there that makes it possible I think testing and a good specialist are the only way to find out.

I do suggest if testing is in the future your boyfriend needs to get all insurance you may need including disability and life insurance in hand first. It will not be an affordable option if diagnosed.

Keep checking in on the forum and let us know your findings.

Mike

Thanks for your answer and tips. My boyfriend does not want to get tested and that's fine with me, though I do find it hard not knowing...

Welcome to the Lighthouse, Mary. I think the reason you are not getting many responses is that there is just no way to tell at this point whether you are seeing symptoms. In fact, even with more possible symptoms, it is hard to tell. When I first joined the online community late in 1997 (the old MGH chatroom), we had eight regular chatters in row who were at risk and decided to test because they had symptoms. I remember being sure that the first person to test was positive but he wasn't. And then, one by one, all eight people tested negative. All the symptoms were stress-related and disappeared after the negative test.

Mary,

Please convince your boyfriend to get life insurance and long term care / disability insurance! Then, down the road if his mother is diagnosed and he wants testing, that will already be in place. If he waits, they will deny him or have a case to fight paying out. If he does have HD, he will become more symptomatic over the next 5-10 years and may need disability by his late 30s or early 40s. That is just based on the average and what you have said with him and his mom. Successive generations typically have longer CAG repeats and therefore earlier onset. Let us know how it goes.

Be Blessed,
Amber