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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 10-02-16, 12:50 AM   #1
Ashyrose7
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Join Date: Nov 2015
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Default Update, moving on

Hello all,
As you probably know I was waiting to meet with the psychiatrist to see if he thinks I was ready to go forward with testing. I was really nervous about it because I don't get on with my counsellor and she seems to want to change my mind, but it went really well, he was lovely, we had a chat about my life and how I manage day to day etc. I thought I was going to be in there for an hour, we were done in fifteen minutes and he even said he doesn't know why I was referred to him because I seem to know what I want. This is the outcome I was hoping for.

My counsellor phoned me today to make an appointment for the test. It's on 2nd March.
Can anyone shed some light on what happens at the actual test?
Getting kind of nervous now.

Ashy x
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Old 10-02-16, 01:34 AM   #2
shiraz
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Default Re: Update, moving on

AshyRose
Glad someone actually listened to YOU.

My experience of the test is that you will simply turn up, be given a form to fill in asking basic personal info (dob, address, age, next of kin etc) and wait to have a phial of blood taken and (as in Hubs case) have a brain scan. Then you go home and wait for anything from 3 weeks (to 3 months in his case) to receive a date to go get your results....that is an anxious time to say the least. There wasn't any discussion, didn't see a consultant or doctor or any counselling (thereagain he had no counselling) - so this is just our experience of what happened......Good Luck
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Old 10-02-16, 07:26 AM   #3
Gabby
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Default Re: Update, moving on

Quote:
Originally Posted by Ashyrose7 View Post
Hello all,
As you probably know I was waiting to meet with the psychiatrist to see if he thinks I was ready to go forward with testing. I was really nervous about it because I don't get on with my counsellor and she seems to want to change my mind, but it went really well, he was lovely, we had a chat about my life and how I manage day to day etc. I thought I was going to be in there for an hour, we were done in fifteen minutes and he even said he doesn't know why I was referred to him because I seem to know what I want. This is the outcome I was hoping for.

My counsellor phoned me today to make an appointment for the test. It's on 2nd March.
Can anyone shed some light on what happens at the actual test?
Getting kind of nervous now.

Ashy x
From the experience of my husbands testing 8 years ago it was like a normal blood test sit with a phleb form they take blood and off you go xx


good luck

Gabby
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Old 10-02-16, 10:51 AM   #4
fiona75
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Join Date: Jan 2015
Location: Bromsgrove, Worcestershire
Posts: 30
Default Re: Update, moving on

Good news that you can go ahead with the test. There's nothing worse than knowing your ready and having obstacles put in your way. When I had my test about this time last year I had to go for a nurological exam with the consultant. This was to identify if I had any early signs of the disease that might give them an indication of potential onset. They only do this with people who are nearing onset (I was 40 at the time of test). They then took a blood sample and a date was made for 4 weeks later to get the results as it takes about 3 weeks for them to test the blood. This is then followed up by further counselling if needed. Good luck x
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Old 10-02-16, 06:41 PM   #5
Crystal
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Join Date: Sep 2015
Posts: 237
Default Re: Update, moving on

Quote:
Originally Posted by Ashyrose7 View Post
Hello all,
As you probably know I was waiting to meet with the psychiatrist to see if he thinks I was ready to go forward with testing. I was really nervous about it because I don't get on with my counsellor and she seems to want to change my mind, but it went really well, he was lovely, we had a chat about my life and how I manage day to day etc. I thought I was going to be in there for an hour, we were done in fifteen minutes and he even said he doesn't know why I was referred to him because I seem to know what I want. This is the outcome I was hoping for.

My counsellor phoned me today to make an appointment for the test. It's on 2nd March.
Can anyone shed some light on what happens at the actual test?
Getting kind of nervous now.

Ashy x
Hi Ashy - experience of the actual blood test within our own family was the same as having any other blood test taken - was over very quickly, taken at our local hospital, but the blood sample was then sent away to another hospital for testing (London hospital). The wait for the results was a couple of months or so for each of those within our family who have taken the test so understandably an anxious time for all concerned. Glad you have the outcome you struggled to get and thinking of you.
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Old 15-02-16, 01:12 AM   #6
glasshalffull
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Join Date: Aug 2015
Location: Kent
Posts: 57
Default Re: Update, moving on

Quote:
Originally Posted by Ashyrose7 View Post
Hello all,
As you probably know I was waiting to meet with the psychiatrist to see if he thinks I was ready to go forward with testing. I was really nervous about it because I don't get on with my counsellor and she seems to want to change my mind, but it went really well, he was lovely, we had a chat about my life and how I manage day to day etc. I thought I was going to be in there for an hour, we were done in fifteen minutes and he even said he doesn't know why I was referred to him because I seem to know what I want. This is the outcome I was hoping for.

My counsellor phoned me today to make an appointment for the test. It's on 2nd March.
Can anyone shed some light on what happens at the actual test?
Getting kind of nervous now.

Ashy x
just wanted to wish you good luck x
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Old 25-02-16, 01:47 PM   #7
Clear&Bright
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Location: West Midlands, UK
Posts: 24
Default Re: Update, moving on

Hope everything goes as well as possible.Keep us updated x
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Old 27-02-16, 09:59 AM   #8
glasshalffull
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Join Date: Aug 2015
Location: Kent
Posts: 57
Default Re: Update, moving on

just wanted to wish you good luck for next week. xx
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Old 27-02-16, 11:10 AM   #9
banda
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Join Date: Apr 2014
Location: Consett, County Durham
Posts: 481
Default Re: Update, moving on

Best wishes for next week...|I feel it isn't the blood test itself which is problematic but the significance of it. Stay strong.
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