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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 04-11-14, 05:18 PM   #1
Crossroads
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Join Date: Sep 2014
Posts: 6
Default Finally received first consultation date

So after a really long wait, the date for my first consultation came through, which is to be in about two weeks.

Kind of annoyed. I requested to the GP (and I saw him type this out in his message to the genetics department) that I would not be sent any letters and that an email would be much better as I don't want anybody else to realise what I'm doing. Well... they did send me an email, but the letter also came through by mistake. Who found it? The person that I didn't want to. Luckily they didn't open it and they aren't the type to open my post generally anyway, but it forced me in to a lie immediately which I'm pretty unhappy with. I'm kind of now doubting the confidentiality of this entire process. How can this happen?

I have so much work to do and the concreteness of knowing a date has smothered my brain in jelly and it just won't work as it should do.

On another note, knowing that it's finally going forward I'm happy but generally feeling really alone. Only one person knows about this, which is my girlfriend but she has her own things going on, and whilst she really understood at first, now it's almost like it's just a known quantity. Like me telling her I may fail a class or something rather than what it really is. Part of me really knows that she does really understand, and I appreciate her more than anything, but I still can't help but feel alone with it.
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Old 06-11-14, 01:03 PM   #2
Crossroads
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Default Re: Finally received first consultation date

..........................
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Old 07-11-14, 09:58 AM   #3
Joseharry
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Location: Crayford, Kent
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Default Re: Finally received first consultation date

Hi Crossroads,

Are you ok?

Brenda .
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Old 10-11-14, 03:36 PM   #4
Serena
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Default Re: Finally received first consultation date

Do you have someone to go with you for 1st session?
I went on my own. Its do-able but they don't recommend...
Took then boyfriend to 2nd & didn't feel very supported (even counsellor recommended taking someone else to next one!)
Took good friend to 3rd & she will come to get results....
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Old 12-11-14, 09:37 AM   #5
Jameson
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Location: Birmingham, UK
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Default Re: Finally received first consultation date

Crossroads,
your girlfriend probably doesn't understand what hd means exactly. It's not that she doesn't care but more likely doesn't understand. Did you talk much about it? Don't be too hard on her but more important, don't be too hard on yourself. It's gonna work out eventually. Are you sure there's no one else who you'd like to tell?
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Old 10-12-14, 09:05 PM   #6
Crossroads
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Default Re: Finally received first consultation date

Quote:
Originally Posted by Jameson View Post
Crossroads,
your girlfriend probably doesn't understand what hd means exactly. It's not that she doesn't care but more likely doesn't understand. Did you talk much about it? Don't be too hard on her but more important, don't be too hard on yourself. It's gonna work out eventually. Are you sure there's no one else who you'd like to tell?
I had my first session and it went quite well. As people who I PM'd know, it didn't all go quite as planned, but what happened wasn't the disaster that I expected it to be.

Finally got my second meeting booked today. This was supposed to happen ages ago but never got sent out. I phoned them today to find out what was going on and the letter the consultant had written up for me had been sat there a week and not sent. The plan was I'd have my second test before christmas, but obviously this didn't happen.

But at least it's booked now, that's something to be happy about.

And your story sounds kind of shocking Serena! Do you mind if I messaged you about how you found the process? Your pms aren't activated at the moment so I'm unable to.
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Old 11-12-14, 05:22 PM   #7
ChelseaMark
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Join Date: Nov 2014
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Default Re: Finally received first consultation date

Quote:
Originally Posted by Crossroads View Post
I had my first session and it went quite well. As people who I PM'd know, it didn't all go quite as planned, but what happened wasn't the disaster that I expected it to be.

Finally got my second meeting booked today. This was supposed to happen ages ago but never got sent out. I phoned them today to find out what was going on and the letter the consultant had written up for me had been sat there a week and not sent. The plan was I'd have my second test before christmas, but obviously this didn't happen.

But at least it's booked now, that's something to be happy about.

And your story sounds kind of shocking Serena! Do you mind if I messaged you about how you found the process? Your pms aren't activated at the moment so I'm unable to.
I thought I'd just add in support of your girlfriend that she probably doesn't really comprehend what's happening, which in your understandably sensitive state may come across as indifference. I did it on my own, which I found easier. But that suited my particular personality, I think everyone handles these things differently. I was negative but when I told my (at the time quite new) girlfriend she couldn't really grasp it, it only really sank in for her later on. We're married with kids now so there can be good outcomes and I'm crossing my fingers for you. This MB is a great outlet as there's tons of support and great advice on it from people who understand your situation.
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