I just wanted to touch basis with everyone out there that is at-risk but is considering testing or at-risk and are set against it.

I am wondering if you are considering it why and if you are set against it, what reasons do you have?

I know that testing is a personal issue and a personal choice. I have been dead set against it until recently and now I am on the fence. Just wondering what other "at risker's" thoughts are... Thanks

Could you move over , I am on the same fence . I think for myself , it has to do with , when I test how will it help my life . If it does not help immediately , then waiting until , it does have an immediate impact seems like a reasonable choice. db



Edited 1 time(s). Last edit at 09/07/2007 07:03AM by db.

I tested when a friend beacme symtomatic and I wanted to know my status. I was 56 years old at the time. My CAG is 37, so I may or may nor develop symptoms.

I just decided last night that I am going to test, anonymously. After a year of anxiety, I think it would just be better to know for sure. If it comes back POS, well, that sucks, but I can make plans. If NEG, then I can, again, make plans. Living on the fence has been hard. I guess that I am tired of symptom hunting.

Now, I am just searching this site, looking for the best way to do it.

db. Writes"I think for myself , it has to do with , when I test how will it help my life . If it does not help immediately , then waiting until , it does have an immediate impact seems like a reasonable choice. db"


Hi
Being at risk itself has a definite impact on ones life,Of course,testing is a choice that only you can make, you just need to take everything in your life into consideration before making the decision.

Good Luck on Your Journey
Ron C.

I was dead set against testing until my younger sister by 3 years was diagnosed as early symptomatic before she was 30. My mom was 42 when she started symptoms. I went from not wanting to know to needing to find out.

It was hard to hear a positive result. My CAG repeat is 3 numbers higher than my sister. I suffer from depression, which I take medication for. I am working on exercising more.

That was a little more than 3 years ago. I do not regret testing but I regret losing that last little bit of hope that I could be negative.

Good luck -

Stacy-NJ

Hi Ron I just wanted to say , of course you are right , that being at risk , does impact ones life . I was thinking for myself ; if I needed to test for Disability insurance ; or if there was a treatment , that I would then be eligible for ; for some other private reasons ; then most certainly I would test . The testing would have to have an immediate value for me . For each person , I would think , testing should help them in a specific way . You know my Hemoglobin is down this week ; maybe I am not explaining myself as clearly as I wish I could . Sorry . Not enough oxygen getting to my brain . All my best. db

Well, one of the reasons that I am going to test is that there are so many studies going on that I can get into. There is one involving purified creatine that is supposed to delay onset. So, knowing can be a good thing in that it can make me proactive and get me invoolved in some study groups. No cure yet, but plenty of hope.

I'm very new to this forum. My dad has late onset, and very low numbers for HD. He's 82 and is really starting to show heavy signs of this disease.
I've really put off getting tested myself..I was scared to hear the results. I don't want to know I have HD, I want to continue with my head in the sand. I have 2 daughters though, and I think I need to find out if this insidious disease ended with my dad. It doesn't skip a generation right?
But then I read this note....To know now, and start taking the vitamins NOW, and get on a program NOW, I may be able to live a better, more productive life. Thank you for that opinion!
HOw do you get tested? Through my fam. doc? or specialist?

A neurologist is best. But your family doctor can order the blood tests, as well.

The family doctor would probably not have the expertise to do the CLINICAL tests, though.

I have decided that if I do test, that I agree with living_everyday that I would test anonymously. I think that it would help with the piece of mind. Then the knowledge would be mine to do what I want with.

db, You could not have stated more perfectly how I feel about being on this fence. I am also considering how knowing either way would help my life. I am not in a position- work and family wise -that I could be part of any research at this time. I hardly have time to sleep!

I was afraid that I was symptomic because of a high anxiety level I had sustained since some heavy life events happened in spring but I saw a neurologist last week and he said he felt that I was neurolgically sound and I have noticed that the majority..not all by any means...of my physical issues are clearing up. (Text Book At Risker I Know!!)

So I am back to being on the fence since I don't feel that testing will do anything for my anxiety that the neurologist didn't already do. And if I am not symptomatic then I don't need a doctor's care (another reason I would test).

I would really like to test negative and be able to tell my father since he spends a lot of time worrying about me (I am his only child that is not hd + at this time) and my daughter (the only grandchild by blood he will ever have) but that's not really the right reason to test? Right?

It is a dilemma.

My feeling is - I will take the test, but I will have to be very ready for that first. Whatever the result will be, I can better plan for my future. I do not want to live my whole life with an unknown, and also endless worries and anxiety.

It is really a personal decision which may apparently influence many aspects of your life, such as your career, insurance, and for some people, even marriage and having children.

I am not yet ready. I believe I still need to learn a lot before so.

Good luck.

I tested negative in July - so it worked well out for me. My thinking was:

-I didn't want to spend the rest of my life at risk. At risk, was becoming a major drawback.
-If I was gene positive, I could be ready to jump on to any experimental treatment that might come up.
-My kids would have to be told soon about HD - so I wanted to have a chance to tell them it was gone forever, instead of 25% at risk chance if I did nothing.

That said, getting tested when you are asymptomatic is intense - they said only 8% of people do it. The HD cartel has blown it by thinking they have come up with the perfect testing "protocol". They are way off base.

Once there is some form of treatment available, then everybody at risk might or should consider testing. That will change everything we know about this proccess.

I tested anonymously, Tracie. Paid for it, myself. No insurance company involved.

That said - if one can't afford to do that (as many can't) - one DOES have protection under the HIPAA laws.

One only needs to make sure that the physician engaged for the testing is AWARE of the HIPAA laws.

ASK!!! If they can't give you a reasonable answer - beat feet outta there!

My neurologist was knowledgeble about those "medical-privacy" laws. As a result, she has been extremely discrete.

No medical information is given (especially testing results) - unless I expressly OK it, via a signed release.

Ask! If your physician cannot quote the essence of the HIPAA laws - seek another physician!

Hi everyone,
Your thoughts on this are vitally important to me right now! Im two weeks away from my first genetics counselling appointment in the testing protocol in the UK and Im really anxious. So I really appreciate your different takes on this.
I've decided to get tested because my brother two years older tested positive, and the news proved a turning point for me in terms of my ability to live with uncertainty about my own status.
I think my age has a lot to do with wanting to be tested, even though Im asymptomatic. My family members' onset age has been mid to late 40s, and Im 48.
I also want to be able to make career plans, and a positive diagnosis would rule some things out for me and clarify others.
Since my brother's diagnosis, I swing between guilt over his situation in case Im negative, and fear in case Im positive. Im hoping a test might lay one of those to rest. But of course it will also open up so much more that I cant yet foresee. I guess its down to not being able to live with the uncertainty anymore.
As the counselling appointment nears, Im imagining all my middle-aged memory lapses and driving errors mean I've got it. Is this normal for at-riskers in the pre-test period?
Thanks! x Fleur

Hi. I'm new to HD Lighthouse; joined after my doctor suggested it.
I am at risk, and wanted to get tested for years; never understood why anyone wouldn't want to. Once I started the testing process, however, I realised how difficult the emotional process is. My doctor suggested that I put testing on hold for now, because it would be too detrimental at the moment. Best decision ever. I'm glad I am waiting until I am at a better place in my life.

There is one practical reason one may want to test. Denial. As we know that is a big problem that leads to non-treatment. The earlier you accept HD if you are positive, the more likely you are to train yourself to accept medical and family input when the time comes. Once the disease begins and is clearly a problem to everyone else, the suffer can not see the problems themselves at that point and denies them. I generally favor the test based on that factor. There are of course mitigating circumstances that doesn't make that the answer as to to whether to test... but it should be considered as well. I am sure that there are a bunch of people who if they had 5, 10 or more years to warm up to the idea of testing positive that when symptoms began they would have hopped right into plans they made for themselves rather than denying and creating hardship for themselves and everyone else.

Hi Willow,
I can definitely relate to the emotional process involved. I guess everybody has to go at their own pace on this, and only you know what is best. Sounds like you have a good doctor too.
I am starting the pre-test counselling soon. But Im keeping my options open to change my mind at any point and postpone the test, like you did, if I realise Im not ready. Thanks for sharing your experience on that.
Eric's point about advantages of knowing your status before you develop symptoms is very helpful too.
Best wishes,
Fleur

Hi Fleur,
I recently tested positive. I do not regret testing. My genes have known since day one that i have Hd. Now i can be proactive and try supplements and exercise. Before testing, i would have been lazy about it. Nothing like a positive test to kick you up the butt. I admit it was hard at first (i have known a month), But on the upside i have suffered with BAD pmt all my life was prescribed Prozac to help with it, that i never took. I finally took the Evening primrose that has been lurking in my cupboard. Consistently... and i have to say my husband was very happy with results. Lets be honest, he should know! I haven't missed a day of supplements, I am finding time to try and put myself first. With two young children that is no mean feat....
To know is scary at first, but i found it less scary than not knowing. I really thought i was not that concerned, but since testing positive i know that i was REALLY worried and even to have a positive result is better than none. Mind you that is just me. I hope you find the answer you are looking for.

ladycashel