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Testing, or at risk Discuss testing for Huntingtonís disease, and living with the risk of HD

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Old 23-01-18, 10:36 PM   #1
StrawberryFields
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Default Going through testing

I get my result in just over a week. Iím prepared for the worst (have been twitching and getting frustrated for over a year now). I have more to lose than to gain In confirming what deep down I know is my destiny but I feel that I need to know in order to plan for my future and to prepare my children. I know a positive result will crucify me because my children will become what Iíve been all these years, ĎAt Riskí and my heart will break. Trying to stay positive as I know that being a misery and a drama queen will help nobody. Need to stay strong for my family but need to vent somewhere. Thanks for listening to anyone reading this.
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Old 24-01-18, 10:19 AM   #2
Trish
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Default Re: Going through testing

Hi SF

Vent away, it's what this place is for.

It's also for sharing experiences and if you have not already picked up on this in another Thread we have a Member of Messy Board who has just been through the testing process and shared her experience on a Radio 4 programme and a local BBC News show. I have put a link below to the Thread.

Good luck with your result and I hope you are getting a lot of support before and on the day.

Thread HERE
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Old 24-01-18, 02:09 PM   #3
banda
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Default Re: Going through testing

Thinking of you....do use the support that you have and this MB is always here too, x
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Old 28-01-18, 08:10 AM   #4
StrawberryFields
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Default Re: Going through testing

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Originally Posted by Trish View Post
Hi SF

Vent away, it's what this place is for.

It's also for sharing experiences and if you have not already picked up on this in another Thread we have a Member of Messy Board who has just been through the testing process and shared her experience on a Radio 4 programme and a local BBC News show. I have put a link below to the Thread.

Good luck with your result and I hope you are getting a lot of support before and on the day.

Thread HERE
Thanks Trish. The wait feels like forever but not long now.
Iíve watched a few accounts of people getting their results- it seems extremely nerve wracking waiting to go in and getting your envelope. I think itís going to be positive as I have some symptoms already ranging from jerks to abnormal eye movements but they are still subtle and I think youíve got to be very obvious to be diagnosed. My Dad was 39 when he was diagnosed. Iím 36. Donít know his CAG repeat as he didnít have the test- it was pre 1993.
Thanks again. SF x
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Old 29-01-18, 03:01 PM   #5
Tom B
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Default Re: Going through testing

Quote:
Originally Posted by StrawberryFields View Post
I get my result in just over a week. Iím prepared for the worst (have been twitching and getting frustrated for over a year now). I have more to lose than to gain In confirming what deep down I know is my destiny but I feel that I need to know in order to plan for my future and to prepare my children. I know a positive result will crucify me because my children will become what Iíve been all these years, ĎAt Riskí and my heart will break. Trying to stay positive as I know that being a misery and a drama queen will help nobody. Need to stay strong for my family but need to vent somewhere. Thanks for listening to anyone reading this.

I'm a bit late replying to this, my apologies.

Two years ago my wife was tested, she was negative. She had twitches in her eye, she could not keep her thumbs still and her leg was on the go all the while, none more so than the 11 months we went through counselling. She was convinced she was going to be positive, that was not the case.

We know exactly what you are going through, the biggest fear we had was for our children. Nothing we can say can make you feel any better but know this, we have our fingers crossed for you and we hope and pray you have the same result that my wife did. We're thinking of you, take care x
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Old 30-01-18, 12:18 AM   #6
charliegirl
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Default Re: Going through testing

Quote:
Originally Posted by StrawberryFields View Post
Thanks Trish. The wait feels like forever but not long now.
Iíve watched a few accounts of people getting their results- it seems extremely nerve wracking waiting to go in and getting your envelope. I think itís going to be positive as I have some symptoms already ranging from jerks to abnormal eye movements but they are still subtle and I think youíve got to be very obvious to be diagnosed. My Dad was 39 when he was diagnosed. Iím 36. Donít know his CAG repeat as he didnít have the test- it was pre 1993.
Thanks again. SF x
Hi - my thoughts are with you too . I hope that the result is good for you . Mine wasnít - but I desperately needed to know . I have CAG of 41 I am 49 years old .
I have depression and anxiety but manage. My way of coping is by talking about hd openly . Itís a roller coaster ride that none of us want to be on but it is important to appreciate the things that are important . The current research is awesome too . Lv Charlie girl 🐶 xx
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Old 30-01-18, 09:50 PM   #7
Hoping81
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Default Re: Going through testing

Quote:
Originally Posted by StrawberryFields View Post
I get my result in just over a week. Iím prepared for the worst (have been twitching and getting frustrated for over a year now). I have more to lose than to gain In confirming what deep down I know is my destiny but I feel that I need to know in order to plan for my future and to prepare my children. I know a positive result will crucify me because my children will become what Iíve been all these years, ĎAt Riskí and my heart will break. Trying to stay positive as I know that being a misery and a drama queen will help nobody. Need to stay strong for my family but need to vent somewhere. Thanks for listening to anyone reading this.
Hi, just wanted to wish you luck.
Im getting my blood draw next thursday so im going to be in the same boat. Its such a roller coaster. Sending you a virtual hug x

Ive spotted you too are from newcastle small world. Are you at centre for life?
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Old 31-01-18, 09:50 PM   #8
StrawberryFields
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Default Re: Going through testing

Quote:
Originally Posted by charliegirl View Post
Hi - my thoughts are with you too . I hope that the result is good for you . Mine wasnít - but I desperately needed to know . I have CAG of 41 I am 49 years old .
I have depression and anxiety but manage. My way of coping is by talking about hd openly . Itís a roller coaster ride that none of us want to be on but it is important to appreciate the things that are important . The current research is awesome too . Lv Charlie girl 🐶 xx
Thank you charliegirl. It is so much better going into this knowing there is hope. I want to be able to talk about it openly but find it hard. Find this place a real comfort to be honest- have been reading other peopleís posts for years and itís good to hear from people going through the same kind of issues. Thanks again xx
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Old 31-01-18, 09:53 PM   #9
StrawberryFields
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Default Re: Going through testing

Quote:
Originally Posted by Tom B View Post
I'm a bit late replying to this, my apologies.

Two years ago my wife was tested, she was negative. She had twitches in her eye, she could not keep her thumbs still and her leg was on the go all the while, none more so than the 11 months we went through counselling. She was convinced she was going to be positive, that was not the case.

We know exactly what you are going through, the biggest fear we had was for our children. Nothing we can say can make you feel any better but know this, we have our fingers crossed for you and we hope and pray you have the same result that my wife did. We're thinking of you, take care x
Thank you Tom. It really does mean a lot Xx
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Old 31-01-18, 10:03 PM   #10
StrawberryFields
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Default Re: Going through testing

Quote:
Originally Posted by Hoping81 View Post
Hi, just wanted to wish you luck.
Im getting my blood draw next thursday so im going to be in the same boat. Its such a roller coaster. Sending you a virtual hug x

Ive spotted you too are from newcastle small world. Are you at centre for life?
Hi there. Yes - at Centre for Life. I went expecting to have blood taken but it was an oral DNA swab. Had mentally prepared for a needle then had oral swab- like the police taking a DNA sample! Had to laugh as I ended up being worried that Iíd just eaten a bar of chocolate and that my lipstick would be in the sample! Am hoping to pluck up the courage to one day get involved with HDA/ support group as I do think that talking to people in the same boat is helpful. Best of luck to you and a virtual hug right back at you. Feel in safe hands with Centre for Life and that theyíll support with getting involved in research -which my Dad and others like him never got the chance to do bless him/ them. Take care X
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