Curious... I was tested and my CAG's came back with 17 and 18 (from each parent...) I know what this means, but I am scared that somehow they messed up my test. I have been petrified, for years, to even have hope for the possibility of not having this disease and now I can't believe my results. I twitch, lose my balance, have moments of unexplained anger, stumble over my words...

I feel crazy. I am driving myself crazy. I have a sister, just a year older than me, who has declined so far in the past year that I am afraid she won't make it much longer. Two family members already killed themselves because of this, my dad has it, my sister has it, brother is at risk, and three nieces are at risk.

What do I do about my paranoia? Am I manifesting these symptoms, I really want to believe I don't have it... Why is it so hard?



Edited 1 time(s). Last edit at 03/01/2012 04:01PM by bluedaisy.

Have other people in your family tested positive or have all of them been diagnosed clinically?

My grandpa killed himself in 1985; it was a mystery then as to why he was having the problems he had. Then after my dad was finally diagnosed (2005; symptomatic, then test confirmed) the family found a letter from my grandpa's doctor (from 1985) that said he most likely was experiencing Huntington's Chorea but they could not know for sure because he didn't have any biological family history to compare (he was adopted in the 1920's). My grandmother knew but had decided to hide it from the family.

After we knew for sure what was wrong with my dad it all made sense. My uncle was also symptomatic, tested positive and killed himself in 2010. My sister tested positive and symptomatic in early 2011. She is 34 with 47 CAG. She is having severe mental, reasoning, and motor difficulties. We knew she had it before the test. She has had multiple suicide attempts (even before we knew about HD; but the most recent was after diagnosis and she nearly succeeded). Everything came together after we knew it was in the family. It's weird because I never knew this disease before 2005; but it had already destroyed my family. The difference now is that I know the reason for all the pain and heartache.

I just wanted to check and be sure that it was HD in your family and not one of the rare HD-like diseases. You have nothing to worry about. I've never heard of a case where someone tested negative and the test was wrong, ever. What I have heard from a majority of people who have tested negative is that they do go through a period of wondering if the test was wrong. I think that when someone is at risk they often rehearse how they will react to getting bad news while they are waiting to get the results, just so they are prepared. Others test because symptoms caused by anxiety and stress seem like HD symptoms and they are convinced they do have the gene. Then the test comes back and it's negative and they are relieved but shocked too. It's hard to get your head around the idea that you are no longer at risk and will not get HD when you have spent so much time thinking that you might.

So your worry that the test might be wrong is misplaced but it's also entirely normal!

Thank you for your reply. It is so nice to have a place to ask the questions nobody else seems to understand. I find a great comfort in knowing that others have expeirenced similar issues.

Hi Bluedaisy,

My husband recently tested negative, and the genetics counselor informed us, when we got the result, that doubting the accuracy of the test or wondering whether there was a lab error is quite common! In fact, I have to admit that, as ecstatic as I've been to have learned that my husband and our son no longer have to worry about HD, I've sometimes had the same thoughts: "What if they made a mistake!? Can it REALLY be negative??!!" I try to push those thoughts aside and just enjoy the relief. Still, they cross my mind. And not infrequently.

You're not alone! Far from it!

It's been strange, after worrying so much about HD for 6 months, to adapt to the reality that we don't need to worry anymore, to believe it. I can only imagine how much more difficult it could be to believe you don't have HD (even though that's exactly what you want to believe) after being petrified for YEARS, as you say you were. For me, it was only 6 months . . .

I'll bet you can find others on this forum, or elsewhere on the web (maybe through perusing old postings?) who doubted the accuracy of their negative results. This might help you to see that such doubts are not uncommon, and, maybe, help you to feel less worried that your results are wrong!

Bluegrass

P.S. My husband still notices twitces and spasms, frequently, since having tested negative.

Thank you, it really is a blessing. I am happy for you, your husband, and you baby!

You got tested and dont have it? YAY! Be happy

Yes, I am. Grateful for my kids, that was an unimaginable relief. Now I just to tackle my thinking. It's not over just like that. Still my closests(sp) family are either at risk or have it. I'm grateful, but still hard to understand.

Maybe you need to have some other test. Who's to say you don't have another illness. With the symptoms you described I would certainly want an answer. I was misdiagnosed for almost two years. I kept looking for specialist knowing they were not looking at the whole person. Finally i hit the jackpot and found Dr's who did not make assumptions. It was actually a vestibular therapist who recognized neurological symptoms. I had Dr's put their hands up and say I don't know what is wrong or what to do (this one had very good credentials). The therapist suggested my current medical care, he was concerened. After some reflection, we decided the other specialist were concerened I was seeking disability which could't be farther from the truth. That's what assumptions get you, not the medical provider.

After about 4 neurologist at Mayo (Jax) I was ask to test for HD, I thought OK, it was the last thing we expected. Just blew it off as another test. Family looked it up; no way you have that. Lo and behold I got a call and guess what. HD positive. No family history. Well, it all had to start somewhere I guess. My biggest concern is my children and wife and how I leave this world. Thankful I don't have psychological issues.

As far as testing, I would be pretty confident and thankful. As explained to me at Mayo there were some issues early (I think early 90's) where they had some problems. These were quickly resolved.

You know how you feel. You have to be your advocate and once everything is exhausted then consider well maybe it's o.k. (my best advise)

Count your blessing girl......you can't control the results for the rest of your familiy but you can support them and help them navigate life. They will need it. Hope I didn't bore you.......

Good Luck,
Mike



Edited 1 time(s). Last edit at 04/01/2012 06:12PM by mikee.

Thanks Mikee for the advice, and no you're not boring me! A side note: I went to the neurologist convinced I had HD which turned out I was wrong. But he did recognize some of my clouded thinking, fatigue, muscle spasms and asked if I snore loudly. I said "ya." He set me up for a sleep study and I do have severe sleep apnea (stop breathing every 2-3 minutes). Just started using the breathing machine (CPAP) at night. Hopefully this will help me out some.

Using a breathing machine at age 32 doesn't seem so bad when compared to HD! Keep up your positive attitude! You are very lucky to not be experiencing the psychological aspects that can come with HD.

Glad everyone was able to help. Yes, I am very lucky.

I've been on cpap since earl 40's. It doses make a difference as long as you use it. My wife couldn't sleep because I stopped breathing so often.

I would probably have the same worries too, feel guilt. Maybe your were spared so you can be their voice. Who knows. I find myself doubting my diagnosis at times. Retested just to make sure. Still have some doubts. Then other times wonder if it's getting worse. We can be our own worst enemy somtime.

Keep plugging away......Happy Easter.

Mike

So my sister Colleen and I both found out we were at risk at the same time back in 1996. WE had identical emotional and cognitive symptoms and both had the entire list of them. She tested negative and I tested positive three weeks after her. So I knew what my problem had been all those years but she still had no answer for her symptoms. I had wondered about enviroment playing a part as she was raised with by an HD father and had an older HD sister, unbeknowst to her at the time. But that would not account for all of her HD personality traits and quirks.
We are still certain that Colleen has some kind of neurological condition but it is not HD. So I have always understood those who tested negative and found themselves with still no answers. But the reality of it is that sometimes people are HD negative but have still some other neurological condition.
So my advice to you Blue Daisy is to back to the DR now that HD has been eleminated and have them test for other neurological conditions that might explain your symptoms.



Edited 1 time(s). Last edit at 04/18/2012 12:15PM by Kelly B.