Hi,

I am new here and would like to introduce myself. I am 31 yrs. old, married with three boys (under the age of 10) and at risk for HD. My father has HD (CAG 45)...he is in his later 50's and he got it from his mother. I go back and forth about whether or not to test. Most people tell me I shouldn't do it NOW....NOW is not the time. They say I should just enjoy my family and if/when the time comes where I think I might be having symptoms....then go ahead and do it. That makes sense and for now that's what I'm doing. But the "not knowing" also drives me nuts a lot of the time....so we'll see what I'm going to do.
Anyways I know I'm going to have a lot of questions so its definitely nice to have found this site!

I'm sorry you have a need to be here, but very glad you found us. As I always say, hopefully we can help with information and support and we will learn from you and your experiences as well.

Welcome! Lots of newbies these past couple weeks, in a similar age group! And one of them also debating testing, like you.

I hope you find info here that can help you in making that tough decision. For me, I wanted to either be able to stop worrying about it (everybody's first choice of course!); or if I was positive, I at least didn't want to be blind-sided like others in my family, and be proactive with Insurance, Supplements, Studies, etc.

I just told one of the other new posters that even with my positive result, overall I have less stress about HD now than I did when I was obcessing about my 50/50 status. But I should add that there have been maybe 3-4 times (in 9 months since my test) when it's crossed my mind that maybe it would have been better NOT to know.

Speaking of Insurance, if you DO test, get all the Life, Disability, and Long-Term-Care insurance in place beforehand. You can always cancel if you are negative but you may not be able to buy it later if you are positive.

Good luck with your decision!

Welcome, Ivy. I'm pretty new too, but have already found that this is a wonderful place for support, knowledge and information. I'm so sorry, too, for your at-risk status! My son is also wrestling with to test or not to test, so I know it's an incredibly difficult decision. Hopefully, you find lots of support here!!

Take care,
Michelle

Hello Ivy! WELCOME!!!

Welcome to the forum . db

Hi there welcome.....

I am 46 awaiting test results (next week)

I know exactly what you are going through as a found out i was at risk aged 26 and have been plagued by the 50/50 what ifs for most of my adult life. Most of these 25 years there has been very little info available and what there was, I have now realised, was often incorrect (mis-information from my family etc) the internet has opened up the facts and made a huge difference.

Also like you I have children at risk (2 of).

The thing thats made me get tested is feeling that id reached the right "time" in my emotional growth and could deal with results and also having twitching and toes moving about and everyone telling me "dont worry its just anxiety" when i feel that its not... (only in last year)....

I think now there are lots of suppliments (creatine etc etc..that may help delay symptoms/on set )and hope for cures in the next 10 years or so knowledge is power and if i had my time again I think I would be like sara and test younger.

Heres wishing you peace whatever decisions/choices you make

Lorraine x (UK based)

Hi Lorraine
I am sending positive thoughts your way. I recently received results and I really know how hard that is. I also lived most of my life thinking that I was going to get HD and then I got strength to get my results (almost 2 years after my blood was taken) and I was negative. I also had twitches -for 9 years and many other symptoms that I felt were HD related. Your mind can do wild things. I wish you the best and remember - you have a 50% chance of being negative. Somehow when you live at risk you never look at it that way.
Take care

Welcome Ivy glad you have found us all.

Lorriane, will be thinking of you next week, do let us know how it goes... we have your back

[www.hdyo.org]

THANK YOU everyone for the warm welcome!

Lorraine....keeping my fingers CROSSED for you!!! Wishing you nothing but the best

Welcome Ivy! I'm a newbie too, and I already feel much better have a support group in place. These people are great! I was told that you'll know when the time is right to get tested. I'm at risk, and I know I'm not ready to know. Some day I will, but I'm 22 and would rather get through college first. Glad to see you found us!

Hi Ivy,

My dad had HD and got it from his mom, too. I believe you'll know when the time is right in your heart. Testing is such a personal and difficult decision. I completely understand how the not knowing can drive you nuts. Hang in there and I'm wishing you the very best with everything!!

Do whatever you feel you need to do. You can't worry about what others think. At times they are thinking of themselves in the testing situation and are trying protect their self as well from having to deal with it. No one should influence your decision. by the way I am 31 HD pos with a 45 CAG. I found out last summer