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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 23-07-08, 09:50 PM   #21
Jester
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Hi Frankie

Test results were not clear unfortunately, some areas were worse, others a bit better!!! They have said that on the results of those tests its not HD, but want to re-do them in 12 months and see what happens, if thoses that were worse are worse again then will class it as HD, so we wait another 12 months!! I

2 and a half weeks till the weddings, its scary, the last 18 months has whizzed passed. Sooo excited, only got a couple of last things to do before the wedding. With my memory people are taking bets as to weather I'll remeber to turn up!!

Thanks :o)

Jester
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Old 23-07-08, 10:03 PM   #22
frankie
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Hi Jester,

What a mess at least there are some of the tests were better than before, so its inconclusive and you have to test again in 12 months!

I bet your wedding will be wonderful , one of the best days of your life, so you had better not forget.
I know you wont really.

Please let us know how it all goes.

X
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Old 23-07-08, 10:22 PM   #23
Jester
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Hi Frankie

Thats typical me, never straight forward :o) I have to be the one who is inconclusive!!

It know, its going to be a great day. I promise I'll let know all know how it goes. Got my Mum doing the service, my hubbie to be's best man is a woman and although my Dad is giving me away, my brother is walking me up the isle and doing the speaches, so we're all organised!!

4 weeks from now I'll be a Mrs!!
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Old 23-07-08, 11:41 PM   #24
frankie
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Look forward to hearing from you when you are a "MRS". It will be a real family affair.


XXXXX
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Old 24-07-08, 11:11 AM   #25
katiepie
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Send me snippits DT !

I need a good laff..

XXXX
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Old 24-07-08, 06:44 PM   #26
Patrick
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I just had a phone call from the docs, I thought for a second they had the results early but they needed me to sign a consent form before they started testing in some lab in Salt Lake City, Utah.
This consent form explained about "CAG Repeats" which is the 1st time i've heard of this terminology, so looking at the description I guess Im hoping that my number of CAG Repeats is under 27.
But it was interesting to see that (according to this consent form) if your CAG count is between 27-35 then your apparently not at risk of getting HD symptons, theres 4 results in total based on you CAG repeat count being <27, 27-35, 36-39, and >40.
I didnt know any of this, I thought you was either positive or negative. Has anyone heard of someone having a CAG of between 27->35 but still got the symptons?
I'm curious to find out what my dads CAG repeat count was now.. hmm that'll be tricky to acquire
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Old 24-07-08, 08:22 PM   #27
katiepie
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I'm sure somebody will get to you soon Pat, I know there are members who can answer your question but sadly I can't.


Kath
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Old 24-07-08, 08:31 PM   #28
Patrick
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Quote:
Originally Posted by Ashlee Duffy View Post
Hi Pat, welcome to the board!

Good luck with your results, I am also awaiting mine as of today.

Take Care,
Ashlee xx
Ah Good Luck with yours too, when do you get your results?
They told me next wednesday, but if its positive then they might call me... can you imagine, I thought the worse when they called me today.

EDIT: Thanks for the link!
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Old 24-07-08, 08:39 PM   #29
just1moreperson
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Good luck both of ya
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Old 24-07-08, 08:54 PM   #30
katiepie
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I start crossing stuff again guys
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