I am wanting to get tested, I am at risk. The reason why I want to get tested is because I am having muscle nudges and spasms. Thats the best way I can describe it. If this wasn't happening to me then I would not get tested. I just think that this maybe HD. Did anyone else experience these muscle twitches and nudges and decide to get tested? I have also had anxiety and some depression my entire life. I would love to hear your reasons for getting tested. Thanks!

My walking and running has gotten worse lately. I hadn't gone jogging in 2 years, I think. It was all I could do to stay on one side of the sidewalk.

I was planning on getting tested later this year.

Getting tested won't necessarily tell you whether those muscle spasms you think you're having have anything to do with HD. Getting tested will tell you whether you have the expanded gene or not. You could go to a neurologist and ask them to check for symptoms?

[www.hdyo.org]

I decided to get tested for many reasons. More than anything I was one of those people that couldn't live with the "what if". Not knwoing for sure drove me nuts and consumed my life. I needed to know. I was pretty sure I knew the answer anyway. I resembled my mother and grandmother a lot. I also wanted to know so I could educate my children in the way I was not. I want them to be able to choose to have children or not knowing about this disease. People have lots of different reason for choosing or not choosing to get tested and to each their own. I hope some of this helps and that you find the answers you are looking for somewhere!

I got tested for the exact reasons you listed. Body jerking and anxiety I was sure that I had HD and I did. I wanted to be sure of what benefits I would qualify for at work and through Social Security.

Laura

Hi Papple,

I'll tell you my experience . . .

I am wondering whether it would be appropriate for my husband to be tested. He wants to be, but I fear that it's for the wrong reasons (the reason would be to quell MY anxiety). His mother has HD, and he and our young son (just over 2 months old) are at risk. We found out about HD being in the family right after our son was born.

I have been a basketcase since, worrying about my husband and our little boy. My husband's reasoning is that I'll be a basketcase whether he tests positive or declines to test--I'll worry either way--but, a negative test would enable us to "move on." He's probably right (it's clear that I'm very, very worried now, and we don't even know whether he's gene-positive!)

I don't want, though, for him to make an enormous, life-altering decision for reasons other than his own. I feel such a huge decision shouldn't be made to quell MY anxiety.

I do notice what appear to be symptoms in my husband. BUT, I notice many of the same symptoms in myself, and I'm not at-risk for HD (occasional muscle twitches and spasms, difficulty making decisions, poor driving (okay, I've always been a bad driver!), anxiety, and depression). I've also had choking episodes at night, where it seems I'm choking on my own saliva. In fact, if I were at risk for HD, I'd be completely convinced that I had it. So convinced, in fact, that I wouldn't even feel it were necessary to test. (I'd probably test anyway, convinced I'd get a positive result). But, the thing is, I'm not even at-risk.

I think it can be very easy to notice symptoms when one is looking for them. I NEVER gave any of these symptoms in my husband a second thought before the HD issue came up. Now, I notice them all the time--but, I notice them in ME all the time, too.

You said that you wouldn't get tested if it weren't for the muscle twitches and spasms. I wonder whether you might be experiencing normal twitches (honestly, since I've started thinking about HD, I've noticed the twitches in my own body occurring several times a day; they last for 3 to 10 seconds, and they occur EVERYWHERE--my hands, back, legs, face, etc). And I know, from reading on these forums, that many, many at-risk people have experienced spasms and twitches, and been convinced they had HD, only to test negative.

I guess I just want to suggest, Papple, that if you're the sort of person who would rather not know, unless you're having obvious symptoms, that maybe your "symptoms" aren't so obvious, and that, since you've said you wouldn't test in their absence, maybe you shouldn't test until (and unless!) more obvious symptoms present. It sounds like, today, there's a good chance your symptoms aren't anything different than what anyone else experiences, and if they aren't interfering with your living your life, then maybe it's not time to test (unless you have a burning desire to know regardless, which it doesn't sound like you do).

It must be really, really hard having your 8-month-old son at-risk. I'll tell you what everyone keeps telling me about that: enjoy every moment, and don't let the HD risk rule your lives together! Easier said than done, I know. Perhaps, as two new mothers worrying about our little ones, we can comfort one another a bit.

If you do decide to test, you will be in my thoughts, and my fingers will be crossed for a negative result for you!

Thanks everyone! You all have shined light on the issue, and I appreciate you all taking the time to reply.

dear Blue,
I know what you are talking about. I have that same anxiety about HD and about passing it to my son. Thanks for sharing your story. I know this is not easy for anyone. The way I see testing (for me) is that if I got a negative result I would def live my life differently. I would have more ambition, calmness, and happiness in my life. I feel like being at risk for HD and not knowing is a HUGE dark cloud over me. It is horrible, every waking second I am thinking about it and it is in the way of my life. I really do think that I have it. If I found out FOR SURE that I had it thru testing, at first it would be a hard thing to accept, but then I could approach it better and deal with it. I could try to live my life to the FULLEST and know that I have a certain amount of time left to do so. I really don't think that anyone is ready to hear that they have a life threatening disease like HD. I know I am not....but I am sure that I do have it. I want a set in stone answer. I am not cool with living in the UNKNOWN.....but my sister is....and my brother is not. My father keeps telling me that I don't have it bc I do not act like my mother did. I dont think that has anything to do with it, I think the symptoms arise when they arise and no one can say whether or not you have it by your actions and body language BUT then again that is in my opinion! I feel like crying most days and I watch my toes and fingers to see if they will twitch like my mothers did, and they do. I don't have any full limb twitching, just mostly little things like my finger moves, or a single twitch in my calve muscle or butt. I am so sorry that you are going thru this with your husband. I could not deal with it if the tables were turned and it was my husband at risk. So I know that you must be going thru something that is so very hard to deal with. I am sorry. BUT you know what I always forget? I always forget that people who are at risk for HD have a 50/50 chance of having it or NOT having it. i have never been a optimistic person, I have always been a pessimist. I always have been that way! So try to remember that there is hope. PLUS I have read on here that they have some research going on that MAY potentially be somewhat of a cure. I try not to get my hopes up...but it is pretty damn amazing if you read it on HD buzz! Try to keep your head and stay positive. EVEN I AM TRYING TO DO THAT! LOL You can message me on here anytime you want to chat. Thanks again for sharing your story!

PS- Enjoy being a Mommy.....it is the best thing in the world!

I had your symptoms and a mother diagnosed with HD.
Unlike you I was twitching all the time and everywhere.
I was so sure I had HD, and fear of having passed it on to my kids made me take the test.
I did not have the HD gene.
I still have the twitches.

Papple,
The reason I got tested was for my kids. I had no knowledge of HD before I had them but I knew if I was positive I could participate in Clinical resesrch which could find many significant things including a cure!!!! And I participate in as many studies as I can I wish everyone could!!
Bluegrasslady,
I think if he went to a neurologist for an evaluation both your minds could rest a bit. Its more of the dance like movements that diagnose HD definately than twitches or nudges.
Melissa

Blue-
Your story is so similar to mine. Fast forward 20 plus years now and I tell you what is was like to live with my son and my mom who had HD. It didn't change our love for one another. My son adored my mom and but he said he had been saying goodbye to her for years. Now how has he lived his life? It didn't prevent him from going to school, having friends and graduating college. It has made him compassionate and sensitive to people's needs and disabilities. He lives in New York City and has a full time job. He knows HD is there in the background and I think he has finally thought about the day he meets a girl and how he will handle explaining it all to her someday. So it didn't become a major issue for him until now at 23. Be positive and live your life a shining light for your son. He needs you there cheering him on and telling him the sky's the limit cause it is!

Now I am starting to get tremors in my thumb...just my right one. I still have not gotten tested. I am STILL worried sick. Are tremors a part of HD?