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Testing, or at risk Discuss testing for Huntington’s disease, and living with the risk of HD

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Old 08-03-10, 10:00 AM   #1
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Default Early diagnosis

Hi all,

I am in a place all of us have been and that is to take the test or not.

I am leaning towards not for myself, but as there are younger members of the family my children might want to find out. I realise if they are positive then I will be too, and I am fine with that.

What I really want to know is, if someone untested (me) is showing very early and subtle signs would being confirmed with the gene, open up early use of medicine/drugs.

So what I think I am asking is, is there a benefit to being diagnosed early??
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Old 08-03-10, 02:07 PM   #2
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Default Re: Early diagnosis

ggoodd luckk withh eeverythhing
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Old 08-03-10, 02:34 PM   #3
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Default Re: Early diagnosis

Hi Jules,

It wont open up a cure for you or anything, but it will help you. It would be better to know and act, than to not know and do nothing. There's going to be some good drugs going through clinical trials in the coming years, it would be good for you to be in those trials.

Tc, Matt.
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Old 08-03-10, 03:18 PM   #4
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Default Re: Early diagnosis

Hello Jules,
Fristly want to say, good luck with coming to a decision about testing. For some it' the hardest decision you will probably will ever need make.

I have pondered your question about maybe having more access to treatments if you are in the early/ subtle stages. Some people have depression in the early stages. So there would definitely be an option to have that treated. With or with out HD. Some suffer more from balance, I would suggest, in my planet, you could receive some sort of treatment. Some people have the whole lot. Behaviour, depression, anxiety, concentration etc. It's hard to say what they would wish to treat and how. Again, back on Planet Tel, I would treat the whole lot together. However, I think they try to decide what symptoms can actually be treated, what the lasting benefits would be for treating that particular symptom over another. And, most importantly, for the symptoms that may be alleviated, which one/s are the most detrimental.

I agree with Matty, probably one of the best benefits to you now, or anyone testing, are the trials. It certainly played a huge role in my testing process. and you will be under the radar. You will have periodical assessments. They will track you and be able to say when it is probably starting to show and effect. And, I hope, you will have access to loads of support. (That is after you've tracked everyone down and run yourself rugged. But it is there.) I think then you may feel you have a certain amount of control over your life. It's so insidious, that in my sister's case, unless someone tells her something's not as it should/used to be then she would never know. I suppose I am saying there are benefits to knowing. But not purely from a medical/ treatment aspect.
Don't wait for the storm clouds to pass, learn to dance in the rain.
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Old 08-03-10, 08:19 PM   #5
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Default Re: Early diagnosis

Thank you all for your responses, it really is good to be able to talk to people who know where I am at.

Had a good chat with my daughter today, she has two young children and I think she is coming to the conclusion that she will be tested in order to see where we are at with the children. My son does not want to know or do anything unless he see symptoms, I understand this too.

I am thinking I may go to the doctors shortly to see if I can see a councillor just to talk this through, I am getting worried as I have noticed an issue with my balance, it is very subtle and I correct it before anyone would notice so it is very mild, but I feel it has gotten worse in the last 3/4 months.
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Old 08-03-10, 08:42 PM   #6
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Default Re: Early diagnosis

Hi Jules,
Just because you start the process and have councelling, does not mean you have to test.
I understand more decide not to test than test, but the councelling gives you a chance to talk through your options.
Best of luck.
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