Hi,
It's very nice to see there's an online community - I've been worrying I have symptoms of huntingtons, and while it's only been a few months I find my self stuck worrying, and felt it might help me to share my experience. I apologize for the long post and somewhat disorganized format.

I recall the catalyst to this sort of "chain of events" was when I was more or less reminded that I was at-risk from seeing a post on reddit about someone who tested negative. Prior to this the thought didn't cross my mind often, and I was always able to shrug it off. I think the fact I was in a rut/low mood at the time drove me to look it up on wikipedia, which ended up backfiring. For the next week or so I found myself worrying about one day having it, and how I'd lose my ability to draw and having to live in a home. I did my best to keep my mind off it but pretty much couldn't and was pretty seriously depressed. A short while after I remember I experienced an odd twitch in my leg while I was sitting down. It was from then I started worrying about it even more. Around the same time I started experiencing uncomfortably cold feet from time to time- something that isn't a symptom of huntingtons. Shortly after I started sleeping poorly - waking up in the middle of the night pretty much every night, sometimes falling back asleep, but often it doesn't feel like the case. Lately it feels like the twitching has changed or gotten worse - I mostly notice it my legs, sometimes its a small foot movement, or leg fidget - or odd pulsing or throb in the various leg muscles. But I worry that I'm also experiencing small neck twitches or head movements - I wouldn't describe it as a violent jerk - but a small or uncomfortable movement I'm not sure I intended to make.

I find myself flipping back and forth between "it can't be" and "what else could it be?" - the circumstances on which the symptoms started showing up on tells me this all just has to be a coincidence, - I'm 25 and they started showing up right after I worried about it? and that it's some amalgamation of stress, anxiety, depression and poor sleep, or something else entirely. As some reading tells me anxiety and stress can bring about some of these symptoms - and I've even read some stories of people who were at-risk experiencing symptoms and ended up testing negative. Things aren't bad now -I'm obviously still very capable of getting around and going about my day, I really shouldn't worry - and who knows, even if I have it maybe they'll develop a cure or treatment before it gets too bad?

But it wont go away, so I find myself stuck in a loop of worry. I feel like I've felt the symptoms while not feeling that anxious or stressed - but maybe I just didn't realize I was as anxious or stressed as I was? So I worry about stressing and be anxious - which perpetuates the cycle. I find myself questioning little actions, was that clumsy/un-coordinated of me? Am I being restless and fidgety? I worry that things might be getting worse - last week it's felt harder to draw - the digits in my dominant hand seem shaky and the hand feels tighter - but I also wonder if that's just a mindset or side-effect of starting anxiety medication - I've been on it for about a week now, I don't think I've noticed much difference in my mindset - I still find myself flipping between optimism and worry. I understand it takes awhile to kick in so I'm going to continue with it.

Part of me wants to get the predictive test - get it over with - so I can either move on with my life free from HD - or, be prepared and be able to plan for the future. But part of me feels like holding on the the hope of uncertainty is helping me - if I find I'm positive, I can't help but feel like the rest of my life may be shaped by it. I also worry that what I'm experiencing now might not be HD - as might be the case if I tested negative - but that I may still be positive and the onset has yet to come.

I definitely and considering looking into getting in contact with genetic counseling or some sort of professional that how may be able help me understand this a little better, and what I might be able to do to stay healthy and possibly delay the onset/manage the symptoms.

Hey there! Sorry that you are going through all of this. I can't make your decision on testing... but I can provide some info that may hopefully ease your mind... Over 4 years ago my father in law was diagnosed with HD. This was a total surprise to the family as we didn't know it was in the family history. My husband and I were devestated for his dad and for what this meant for us and our 3 kids. During this time my husband was a nervous wreck and was definitely displaying a lot of the symptoms you discuss above. I would lay awake at night because as soon as he layed down and fell asleep, he would twitch all night long. He went through the testing process pretty quickly - he knew that he had to know either way. He tested negative. A few days after his test, his twitches were gone. Along with a lot of depression and other stress.

Knowing that you are going through this, while I can't say for certain it isn't HD. I'm pretty sure that a lot of it is due to your stress and circumstances.

My advice on testing... only you will know when you are ready (if you are ever truly ready). When it gets to the point that the stress of not knowing is unbearable and is consuming you all day every day, maybe its time to test. But only you can make that decision. Good luck!!

Alex, I know how you feel. My mom was diagnosed over a year ago. I don't think a day goes by that I don't think about it. Every mistake I make at work or anything I forget I blame on the disease. Every step I take I wonder if I'm walking funny. Would I even know if I had symptoms? My mom doesn't think she does and she has very obvious symptoms. If I test positive I'm afraid I will just give up on any time I have left. On the other hand I am so tired of thinking about it every day. Am I making mistakes at work because I've convinced myself I have this horrible disease or do I actually have it?

Hi Alex
My boyfriend had inretrospect symptoms over about 3 years - but the family had no idea - never even heard of HD. Initially diagnoised with Parkinsons,late 2013 about a month ago J advised he had trouble with chewing and his mobilty was as always unsteady. He was on medication s

The consulant for Parkinson, suggested maybe HD, took blood tests and 2 weeks later J and his mum went to see the consultant and his mum came along - and BAM they told him it was HD. He was never fully ready for that = it never even crossed any of our minds that it could be that!

In speaking with J - he said 'well at last I know what I have' and when he read the symptoms J had said he felt better that although it was not nice to read/live with and feel the symptoms of this illness. He was relived to know - at last - to get to the bottom of why he was having all these physical and mental signs. Its early stages thou...

His Dad and Mum at the end of August 2014 are getting tested - and Js brother is on the list to get tested to - it seemed almos the onset they decided this after Js diagnosis.

All Ive seen from Js family is people who want to know! But maybe it is diffrerent for those who have seen the full force of this illness....and have genrations that have had it!!!

Dece