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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 21-12-12, 12:30 PM   #1
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Default Been to the doctor to start the testing process

After two years of deciding, and because I am nearly 30 in a few weeks, I went to the doctor and she has contacted the councillor. So now it is just all the waiting to get the first appointment to see a councillor and get the ball rolling from there. It is frightening and wanting to know all wrapped in to one. My mum has it, but will not admit it or see a specialist. My dad, uncle who was married to my mum's sister who died from it, and one cousin know I have started the process rolling. My dad started discussing it, but I had to ask him to be quiet, my Mum heard the name if the city I am going to to be councilked in, but I had to stop my dad saying anymore. I want to wait until Christmas is over before I tell my Mum who now wonders why we have mentioned this city. I don't want to worry her or have to, not being selfish, but I just need to worry for myself at the moment, think about how she is feeling when I tell her.
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Old 31-12-12, 01:42 AM   #2
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Default Re: Been to the doctor to start the testing process

I was surprised a letter has come through for me to make the appointment. I know anyappointment will be months away but still felt nervous when I saw the letter had come. It came far sooner than I imagined. I have told my sibling and they have offered to take me to some appointments. It is telling my mum now that I worry about due to her denial of having HD. She has been ill recently, with her weakened immunity she seems to be poorly more often, so it has not been the right time to tell her but know I need to.
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Old 31-12-12, 10:17 AM   #3
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Default Re: Been to the doctor to start the testing process

Firstly, I don't think you are selfish by worry about yourself and not your Mum, it's your decision to find out, and your Mum's choice not to. I can see its a hard place for you to be though. I really hope the counselling goes OK, and the result is negative.
Take care
S x
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Old 04-01-13, 05:57 PM   #4
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Default Re: Been to the doctor to start the testing process

Good luck with your first appointment. It is ok to want to look after yourself.
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Old 04-01-13, 10:36 PM   #5
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Default Re: Been to the doctor to start the testing process

Have you considered having the first counseling appointment before you talk to your Mum.
Just because you start down the road to test does not mean you will test.
Some people decide after counseling not to test.
If you did this you would have had a difficult discussion with your Mum that turned out was not necessary.
I do not think this would be you coping out, just being practical given the state of your mum's health and her attitude to HD.Just a different angle to think about, hope it helps.
Best of luck.
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Old 08-01-13, 08:32 PM   #6
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Default Re: Been to the doctor to start the testing process


I've been through this in the last couple of years, playing the yes / no game to the possibilty of being tested, so know how you are feeling.

I went to my first appointment (2 years ago) and saw an amazing lady consultant who spent a long time with me.....listening and talking. She gave me the information I needed and lots of her expertise in this field which was very helpful as she was not emotionally involved (as family members are)

She said the fact that I didn't know meant I was wasn't ready for testing and as I had severe depression at the I had an open ended appointment to return whenever I wanted.

Two years on ....I think I really do want to be tested and am going to contact this consultant again.

remember're not on your own....lots of us are in similar positions and its really hard going to talk honestly with family often emotions get in the way or family politics!!

Take care, keep talking...... and good luck

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Old 03-02-13, 03:14 PM   #7
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Default Re: Been to the doctor to start the testing process

Thank you for your replies and I coukd not make it to the first place, so am waiting for axreferral to another place so have yet to go to any appointment. Yes, I realise I can wait but as I help care for my mum andclive at home she would wonder why I would be going to the city and a family member has to take me as I can't drive. I do certainly wanted to be tested, I am worried about some things that could be atrributed to HD or stress. There is no doubt I want to know, to be in the dark is not what I want and live without being forewarned so to speak.
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