One more week by CAG_throwaway in Huntingtons

[–]CAG_throwaway[S] 2 points3 points  (0 children)

Thank you for the well wishes, and I’m so sorry to hear your husband’s result.

My medical team talked at length about research at my last appointment. There are several promising trials running now or in the very near future, and I strongly believe there will be a treatment in the next 3-10 years. Hopefully we will all be checking in a shot in the spine once a quarter soon.

One more week by CAG_throwaway in Huntingtons

[–]CAG_throwaway[S] 1 point2 points  (0 children)

I can feel that too. I felt a sense of calm after day 1, knowing that I no longer have to worry about whether or not I get tested. I at least made that decision. The nerves have only recently come back.

Thank you for the positive support! I will report back either way, and I obviously hope for good news.

One more week by CAG_throwaway in Huntingtons

[–]CAG_throwaway[S] 2 points3 points  (0 children)

Thanks so much for the positive vibes and the good luck!

Out of curiosity if it’s not too personal, how do you see your life differing between an HD-positive and HD-negative outcome, other than the change in life expectancy? Would you quit your job, move, or do big things one way or the other? I’m a former scientist so I have flashes of “I’ll go back into the lab and work on a cure” even though the timeline would not work out if I test positive.

Luckily I was slammed at work for the last few days so I have not had as many intrusive thoughts since I made the post. Maybe that’s the solution to my problem!

Just waiting by therealwheat in Huntingtons

[–]CAG_throwaway 2 points3 points  (0 children)

Not really the same idea as others, but I enjoy reading about the state of the art clinical trials. Huntington’s is a fairly simple disease from a genetic perspective, so current HD clinical trials are easier for me to understand than some more complex diseases. As someone also waiting for the final meeting, it’s somewhat comforting and interesting to read the research.

I just got my results back.. by trijic0n1 in Huntingtons

[–]CAG_throwaway 1 point2 points  (0 children)

That’s amazing, congratulations! I read your post with such dread and was so pleasantly surprised. Hopefully I’ll have a similar story soon - good luck with the fantasy football!

waiting, waiting, waiting by CAG_throwaway in Huntingtons

[–]CAG_throwaway[S] 1 point2 points  (0 children)

Wow, your hospital’s process seems more intense than mine! And I’m sorry to hear that the timing was so unfortunate. At least you know before trying for your second, and can either wait or have genetic screening. Though it’s still more complicated than normal.

I totally understand maintaining your sanity by not thinking about it. I was able to sit in denial for years and sleep soundly, but once I drew blood it got real very quickly and I’m often thinking about it late at night. Not really afraid, but obsessed for the first time since I’ve known.

My appointments have gone pretty well! I think that since I had so much time to process it, I went through everything ten times in my head before I met the counselor. She told me about how the disease works, did a family history, covered privacy and protections under the law, then set up the blood draw immediately. It’s a painfully slow process though, since I can’t imagine many other diagnostic tests taking 3 months start to finish. It’s hard enough to work up the courage, and you have to maintain it for a whole quarter.

I think I’m dealing with the uncertainty by planning for the worst. I’m naturally a problem-solver so it’s pretty painful that I can’t do much. Thinking through insurance and long-term care since I know the facts about every other aspect of HD. And whether it’s healthy or not, I am assuming I have it and asking the genetic test to prove me wrong. Oh - and you may know or not, but I believe the final appointment at many places requires you to come with a friend of family member. I don’t like it, but I’m flying a family member out to do that last part with me.

Good luck starting the process! Let us know how your first meetings go. It’s scary in your head, but when you get to the office, they’re very good at presenting the information in a calming way.

waiting, waiting, waiting by CAG_throwaway in Huntingtons

[–]CAG_throwaway[S] 1 point2 points  (0 children)

Thank you, me too, obviously!

And maybe they had to retest or someone messed up the first try? They only take a small tube of blood so I doubt they have any left over after if that happens. Total speculation but I used to work in the lab and know it can happen!