I will be thinking of you Fleur. I found the waiting to be hard too.

Glad to see you Fleur, you have been on my mind recently. T.

Thank you, dcb and Fleur for sharing your stories.

Fleur, it sounds like you have a lot of support and a wonderful counseling team, so that is great to hear. I'll be thinking of you this week. Sending good thoughts...

Evie

Thank you so much, really. I havent forgotten any of you at all and am so glad to see your names and posts again.
But it's been hard to look at the messages on this site since I started the testing process. while there is fantastic support from you all in this community, there are the difficult realities of HD as well that come through in the posts, which get scarier to think about as my results day comes closer. I am just taking one step, and day, at a time.
Also spending a lot of time on lighthouse I felt a bit like I had a secret world which I wasnt sharing with my family and that I needed to engage with them and be available, even if it was just watching telly together, rather than have my head buried in my computer while they were around...i guess i found it a bit addictive, talking to you all and reading everyone's posts.
Anyway Im back, and thank you for your kind words.
xx fleur

Thanks very much, Evie. What about you? If you dont mind me asking, where are you in the thinking process about testing?
I think its just so individual, whether or when you want to be tested. There is no right or wrong view or position, if you are at risk -- there is only what's right for you now.
And people do change in how they feel about it, as the years pass. For example, I felt sure my father should be tested when I was 18 and learned Granddad had it. But then when my father was diagnosed 15 years later, I suddenly appreciated my father's position of not wanting to know about it unless he had to (a stance I called the "happy idiot" attitude in myself). But as Ive got near the age when my relatives began showing symptoms, Ive increasingly wanted to know, and felt uncomfortable with the uncertainty.
My genetics consultant said many at-risk patients come in every couple of years and have her do the neurological part of the test only, without getting the bloods drawn, to let them know how many more years they may have to be asymptomatic, without wanting to know whether they carry the gene or not. If they arent showing symptoms, she can tell them that they have about five years symptom free ahead of them. I dont know if they do that in the US.
Fleur

Fleur,

I absolutely agree about engaging with your family instead of being obsessive about this site and others!

I have had to make myself some ground rules LOL. I now log on during lunch at work and late at night instead of all the time.

I was having health issues from being crouched over the computer all the time!

Fleur, that is so interesting about visiting the neurologist every few years for an exam, without getting the blood test. I wonder...how in the world can they determine the number of years I would remain asymptomatic? I've never heard of that, but it sounds like a great option.

I'll be starting the testing process next week, but still don't know if it's a good idea. In the event of a positive result, I don't know what I would do differently with my life. Then again, maybe it would change things completely. It's so hard to know what I would actually do with the information. Maybe it's better not to know, at least for a few more years.

It's interesting that you changed your mind so dramatically over time. That's something I hadn't thought about.

Thanks for the input!

Evie

My opinion of testing. In Massachusetts, there aren't set guidelines or rules for HD testing. MGH will just do it and write it up so that your insurance will cover it. My husband asked at a physical to be tested- he was already having blood drawn for cholesterol, diebetes, ect. (usual physical blood draw). His HD blood test results were written by Baylor University Medical. It took 2 weeks for the results. We were told the results were in and for us to come in (it was Good Friday), my husband's primary, looked at the chart, said "I'm sorry" and left the room. VERY hard Easter weekend for us that year. IF my daughter opts to be tested in the future, I will strongly encourage pre-test conseling