If you have seen my previous post a few weeks back, then you'll know I'm currently on the fence about getting tested.

I was just wondering what went into the test process. How old were you? And what made you decide to get tested?

I appreciate all of your help
-Stephanie

Hi Steph

I am 22 and i started the testing process about 6 months ago. The reason i decided to go ahead with the testing is because i have been showing some symptoms and decided that i need to find out rather than always wondering if it is or isnt hd.

I am having the blood test done on the 5th march and then i get the results on the 3rd april. They have already told me that they think i might be symptomatic so i have prepared myself for the worst!

How old are you and are you going to get tested?



Edited 1 time(s). Last edit at 02/05/2013 07:35PM by melissa1991.

Hello. It's a tough decision to say the least, I hope you find what works for you. I say stay on the fence until you know YOU are ready.

I am 33. At 27 I was determined to get tested, I had to know. I didn't test because I didn't have insurance or a decent career (job). Then I finally got that job (teaching) and insurance. At the same time I started to really see the horrible effects of HD on my fam. Then I got scared and to afraid to test. Deathly afraid that I had it and just didn't want to deal with the fact that I probably passed it on to my kids.

So I put it off. Then I saw the disease destroy my sis's family and watched her lose just about everything (almost her life: close call). I became obssessed and began having all sorts of symptoms: twitching, brain fog, random movements... Then I went to an HD Clinical Research Synposium in Indianapolis: a guest speaker said, "You know you should test when the stress of not knowing is interferring with your ability to live." I decided then and there to test. I couldn't just let this blindside me and lose my kids as had happened to my sis. I had to test and prepare for my life. I came up with a plan for my kids and delineated the course for their care ect...

I made an appointment w/a neuro and opted out of genetic counseling and all that. At the 1st appt. he set up a home blood draw (they came to my house) and about 7 weeks later I went in for my results. The doc didn't even read the results before he came into my room to tell me. He first told me they were missing, then I took the papers from his hands I stared in disdbelief Allele 1: 16 Allele 2: 17 At 32 years old I had won the biggest coin toss of my life. And I never win. The guilt came later. .. I really was prepared for a positive result and never considered the later effects of guilt if I didn't have it. Still working on that one, but grateful my kids will never have to go through testing.


I hope you find peace in whatever decision you make. I dread the day when my nieces come to have to make the decision to test or not.

Hi

Im 23, and i got found out my postive results about 3 months ago. I decided to get tested because the unknown was getting to me... what would i do differently if i knew i had HD? My mother has it, and both my sisters tested positive so i just decided to do it.

For me the process was very easy, my doctor referred me onto the right track, then from there a simple blood test 3 months later, and results 4 months after that.

Even tho i didn't get the result i wanted i am still glad i found out, now i guess i know i have a time limit on when i need to achieve my dreams and it is motivating me to do what i have always wanted.

Good luck, i hope you make the decision that is right for you. If you are still unsure, then theres no rush, you could change your mind in a few months or years and the option is always there.

bluedaisy Wrote:
-------------------------------------------------------

> a guest speaker said, "You know you
> should test when the stress of not knowing is
>interferring with your ability to live."

Very true words. I like that quote.

Patty

Blue Daisy,

Did you run across any insurance inssues while going through your neurologist? Also, did you get long term care insurance etc set up before going? I was just saying last night that if I could just go to the doctor and not have a dragged out process I would be more willing to take the leap. I don't want getting tested to consume my life but at the same time I can't deal with not knowing consuming my life. The whole pre-existing condition stuff really scares me, I don't want to be without health insurance.

melissa1991 Wrote:
-------------------------------------------------------
> Hi Steph
>
> I am 22 and i started the testing process about 6
> months ago. The reason i decided to go ahead with
> the testing is because i have been showing some
> symptoms and decided that i need to find out
> rather than always wondering if it is or isnt hd.
>
> I am having the blood test done on the 5th march
> and then i get the results on the 3rd april. They
> have already told me that they think i might be
> symptomatic so i have prepared myself for the
> worst!
>
> How old are you and are you going to get tested?


I'm 22 as well, and I am kind of on the fence about getting tested. All of my relatives who had Huntington's disease have since passed, so I don't really have anyone to talk to about the testing process. Part of me wants to get tested now to remove all the worry and anxiety, but then again, I'm worried that I wouldn't be able to handle a negative result.

bluedaisy Wrote:
-------------------------------------------------------
> Hello. It's a tough decision to say the least, I
> hope you find what works for you. I say stay on
> the fence until you know YOU are ready.
>
> I am 33. At 27 I was determined to get tested, I
> had to know. I didn't test because I didn't have
> insurance or a decent career (job). Then I finally
> got that job (teaching) and insurance. At the same
> time I started to really see the horrible effects
> of HD on my fam. Then I got scared and to afraid
> to test. Deathly afraid that I had it and just
> didn't want to deal with the fact that I probably
> passed it on to my kids.
>
> So I put it off. Then I saw the disease destroy my
> sis's family and watched her lose just about
> everything (almost her life: close call). I became
> obssessed and began having all sorts of symptoms:
> twitching, brain fog, random movements... Then I
> went to an HD Clinical Research Synposium in
> Indianapolis: a guest speaker said, "You know you
> should test when the stress of not knowing is
> interferring with your ability to live." I decided
> then and there to test. I couldn't just let this
> blindside me and lose my kids as had happened to
> my sis. I had to test and prepare for my life. I
> came up with a plan for my kids and delineated the
> course for their care ect...
>
> I made an appointment w/a neuro and opted out of
> genetic counseling and all that. At the 1st appt.
> he set up a home blood draw (they came to my
> house) and about 7 weeks later I went in for my
> results. The doc didn't even read the results
> before he came into my room to tell me. He first
> told me they were missing, then I took the papers
> from his hands I stared in disdbelief Allele 1: 16
> Allele 2: 17 At 32 years old I had won the biggest
> coin toss of my life. And I never win. The guilt
> came later. .. I really was prepared for a
> positive result and never considered the later
> effects of guilt if I didn't have it. Still
> working on that one, but grateful my kids will
> never have to go through testing.
>
>
> I hope you find peace in whatever decision you
> make. I dread the day when my nieces come to have
> to make the decision to test or not.

Those are some words of wisdom from that guest speaker! I don't think I'm quite there yet. There are some days when I can completely drown in my negative thoughts and feelings regarding the disease, and it causes me to sink into a deep depression. Then there are other days when I just have far too much going on to even get my mind there (school, work, socially, etc). And the downward spiral is almost always triggered by something. I definitely take these words you have spoken to heart and I'll remember them when I'm considering whether or not to get tested.

Thank you.

Aimee666 Wrote:
-------------------------------------------------------
> Hi
>
> Im 23, and i got found out my postive results
> about 3 months ago. I decided to get tested
> because the unknown was getting to me... what
> would i do differently if i knew i had HD? My
> mother has it, and both my sisters tested positive
> so i just decided to do it.
>
> For me the process was very easy, my doctor
> referred me onto the right track, then from there
> a simple blood test 3 months later, and results 4
> months after that.
>
> Even tho i didn't get the result i wanted i am
> still glad i found out, now i guess i know i have
> a time limit on when i need to achieve my dreams
> and it is motivating me to do what i have always
> wanted.
>
> Good luck, i hope you make the decision that is
> right for you. If you are still unsure, then
> theres no rush, you could change your mind in a
> few months or years and the option is always
> there.

Haha, that's actually how I'm kind of working/thinking now! I'm living my life with the thought that I could possibly have a more limited life span than others, which is why I DO want to settle down soon, have some kids, etc. Do they have you go through counseling and whatnot before they read you the results? That's what my mom said they did for my dad years ago, I don't know if things are still the same. And if you are symptomatic, are they obligated to tell you?

Katie, I didn't have any insurance issues. The test was covered under my plan and I didn't consider long-term care insurance. I propably should have, but I had reached a point that was consuming my life. I had to just do it. I didn't tell anyone. I had to do it fast and not consider the after effects, because in the end I didn't care anymore about insurance or financials. I really felt my sanity was slippping away. I did consider the effects on my mind and children: and that is what lead me to test.

bluedaisy Wrote:
-------------------------------------------------------
> Katie, I didn't have any insurance issues. The
> test was covered under my plan and I didn't
> consider long-term care insurance. I propably
> should have, but I had reached a point that was
> consuming my life. I had to just do it. I didn't
> tell anyone. I had to do it fast and not consider
> the after effects, because in the end I didn't
> care anymore about insurance or financials. I
> really felt my sanity was slippping away. I did
> consider the effects on my mind and children: and
> that is what lead me to test.

Were you absolutely sure you were showing symptoms? I try to tell myself I'm jumping to conclusions, but at times, I'm just so certain that I am sick, you know?

I was having some muscle spasms, mood disturbances, balance issues, obssessive, and inability to concentrate

I went in for HD confirmation and came out with a severe sleep apnea diagonsis. Symptoms are only symptoms and don't necessarily mean HD diagnosis. Turns out my symptoms were from a VERY manageable health concern that can be 100% controlled. I just look odd with my CPAP at night.

I really understand your certainty. Regardless of HD positive or negative, you can do things to improve your life. Check out Will's supplement regimin. Cut out anything with substitute sugars (Diet Coke, anything with aspartame or similar product). Exercise, get quality sleep. Blueberries and coconut oil are supposed to be fantastic for brain health. Limit processed foods and grains.

I don't know if this helps, just know you can do things that will help protect your brain from damage. It won't cure anything but it will positively effect your health. The healthier you are ther better your ability to take on illness. When I first learned of HD, I took a destructive route: constant smoking. I said I'd rather die of lung cancer. Well, I've ravaged my body and health (stupidly) and turns out I don't have it. Second, my dad (HD positive) took his diagnosis and became healthier (he's happier now with the diagnosis than I have ever seen him and he's very symptomatic!)

Take care and use HD (whether you have it or not) to make a difference in you for the better. Your 22, and have a great life ahead of you! It may be troubled, but it is still living. Life is a gift, not everyone gets a chance to grow up.

I would consider going to a neurologist and ask for an examination because of your risk. He would have the expertise to tell you whether or not you are truly showing symptoms. It may ease your mind, or discover another reason for your symptoms...

bluedaisy Wrote:
-------------------------------------------------------
> I was having some muscle spasms, mood
> disturbances, balance issues, obssessive, and
> inability to concentrate
>
> I went in for HD confirmation and came out with a
> severe sleep apnea diagonsis. Symptoms are only
> symptoms and don't necessarily mean HD diagnosis.
> Turns out my symptoms were from a VERY manageable
> health concern that can be 100% controlled. I just
> look odd with my CPAP at night.
>
> I really understand your certainty. Regardless of
> HD positive or negative, you can do things to
> improve your life. Check out Will's supplement
> regimin. Cut out anything with substitute sugars
> (Diet Coke, anything with aspartame or similar
> product). Exercise, get quality sleep. Blueberries
> and coconut oil are supposed to be fantastic for
> brain health. Limit processed foods and grains.
>
> I don't know if this helps, just know you can do
> things that will help protect your brain from
> damage. It won't cure anything but it will
> positively effect your health. The healthier you
> are ther better your ability to take on illness.
> When I first learned of HD, I took a destructive
> route: constant smoking. I said I'd rather die of
> lung cancer. Well, I've ravaged my body and health
> (stupidly) and turns out I don't have it. Second,
> my dad (HD positive) took his diagnosis and became
> healthier (he's happier now with the diagnosis
> than I have ever seen him and he's very
> symptomatic!)
>
> Take care and use HD (whether you have it or not)
> to make a difference in you for the better. Your
> 22, and have a great life ahead of you! It may be
> troubled, but it is still living. Life is a gift,
> not everyone gets a chance to grow up.
>
> I would consider going to a neurologist and ask
> for an examination because of your risk. He would
> have the expertise to tell you whether or not you
> are truly showing symptoms. It may ease your mind,
> or discover another reason for your symptoms...

Thank you so much for all of the insight. It makes me feel a lot better knowing that the way I'm feeling is somewhat "normal" in terms of living with HD in the family.

I tested 3 years ago, and I totally fell into this category:

bluedaisy Wrote:
-------------------------------------------------------

> a guest speaker said, "You know you
> should test when the stress of not knowing is
>interferring with your ability to live."
--------------------------------------------------------
Yes, what a great quote!

I had just woken up & smelled the coffee, and realized that my Mom had HD. And I could not stop obcessing about what that meant for her, and for me. I thought I could help her better if I got through my own health worries first.

I also felt that there were positive things I would do differently if I were positive - such as being motivated to spring for the supplments, and participating in the PREDICT study.

I waited about 4 months to save up the money for my test (not under insurance since I didn't have symptoms), and I figured that would give me enough time to change my mind, if I was ever going to. I did not change my mind, of course.

I also clung to quotes like "testing doesn't change your future. it only changes your knowledge of that future." and your ability to do what you can about it.

I thought the stress of a positive result could not be much more stressful than the stress I was experiencing from not knowing..... Well, I was wrong about that. It WAS worse. Testing was the most stressful thing I've ever done. And the fresh positive result really took its toll on me, even with my overall-positive attitude.

Sure you get used to the "new normal" but it takes a really really long time.

But the closer we get to a cure, virtual-cure, or drastically-better treatments, the easier I think it will get.

These days, I sometimes tell others that if you're not having symptoms, and you CAN get it out of your mind, and if it's NOT affecting any immediate big decisions in your life (like having children), then maybe just try to wait until there is a cure or drastic change in treatment.

I do believe those are right around the corner. That is how I've gotten through my positive result. But if you CAN wait til those treatments come, I think it'll be even that much less difficult.

If you can't wait, or don't want to wait (only you know what's best for you), then just be prepared with lots of positive distractions for yourself. We started a new home wine-making hobby, and also got involved in soup kitchen events at my church which was even better - there's nothing like getting the focus off of yourself sometimes.

smiling sara Wrote:
-------------------------------------------------------
> I tested 3 years ago, and I totally fell into this
> category:
>
> bluedaisy Wrote:
> --------------------------------------------------
> -----
>
> > a guest speaker said, "You know you
> > should test when the stress of not knowing is
> >interferring with your ability to live."
> --------------------------------------------------
> ------
> Yes, what a great quote!
>
> I had just woken up & smelled the coffee, and
> realized that my Mom had HD. And I could not stop
> obcessing about what that meant for her, and for
> me. I thought I could help her better if I got
> through my own health worries first.
>
> I also felt that there were positive things I
> would do differently if I were positive - such as
> being motivated to spring for the supplments, and
> participating in the PREDICT study.
>
> I waited about 4 months to save up the money for
> my test (not under insurance since I didn't have
> symptoms), and I figured that would give me enough
> time to change my mind, if I was ever going to. I
> did not change my mind, of course.
>
> I also clung to quotes like "testing doesn't
> change your future. it only changes your knowledge
> of that future." and your ability to do what you
> can about it.
>
> I thought the stress of a positive result could
> not be much more stressful than the stress I was
> experiencing from not knowing..... Well, I was
> wrong about that. It WAS worse. Testing was the
> most stressful thing I've ever done. And the
> fresh positive result really took its toll on me,
> even with my overall-positive attitude.
>
> Sure you get used to the "new normal" but it takes
> a really really long time.
>
> But the closer we get to a cure, virtual-cure, or
> drastically-better treatments, the easier I think
> it will get.
>
> These days, I sometimes tell others that if you're
> not having symptoms, and you CAN get it out of
> your mind, and if it's NOT affecting any immediate
> big decisions in your life (like having children),
> then maybe just try to wait until there is a cure
> or drastic change in treatment.
>
> I do believe those are right around the corner.
> That is how I've gotten through my positive
> result. But if you CAN wait til those treatments
> come, I think it'll be even that much less
> difficult.
>
> If you can't wait, or don't want to wait (only you
> know what's best for you), then just be prepared
> with lots of positive distractions for yourself.
> We started a new home wine-making hobby, and also
> got involved in soup kitchen events at my church
> which was even better - there's nothing like
> getting the focus off of yourself sometimes.


Thank you so much for sharing your story! I think sometimes if I put off getting tested, and find I am positive for HD, I may have waited too long to get involved in studies or supplement treatments, etc. I don't really know how far into the disease you have to be before any kind of treatment would just prove to be a failure, but that's the only real reason for me still slightly clinging to getting tested sooner, rather than later. Otherwise, I'm not sure if I really want to know. As I type this, I actually don't know if what I'm experiencing is sleep deprivation, HD symptoms, or both. But whenever I see the slightest possibility of showing symptoms, I panic and cling to it until I cannot bear to hold any longer. I definitely have a lot more "soul searching"(if you will) to do before I make my decision.

hi my partner was 30 male, decide to get tested because couldn,t cope with not noing, wasn,t good news but his brother had good news.

I had 4 children and one started having seizures and I knew at that time I needed to know so that if I had it and had passed it onto my kids that I needed to be pro active. I was 39 and it was the scariest thing I ever did. But it was negative and I am thankful every minute of my days. I really thought I had it.
Good luck with your decision. You will know when it's right for you.