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Old 19-05-13, 10:05 PM   #11
nixter5287
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Default Re: How many have tested Negative?

I agree, its hard to know the true number of negative results.

I had a negative test result last year and whilst I did post here on the forum when I was going through the testing process, from I received my result I haven't posted once. I do lurk and read bits and pieces as my mum has HD so I want to keep in-the-loop; I didn't want other users to think that I was somehow 'bragging' about my result. I don't know if this is similar for other people who have tested negative.

I have moments of spectacular clumsiness i.e. fall up stairs on a semi regular basis and I managed to drop a kitchen knife tip first into my foot a week before I got married......before I got tested I always wondered if these were early symptoms. I know now that I am a bit of a klutz instead.

I have an older brother who has not been tested and is happy enough with that for the moment.

I don't know if that was any use, sorry!!

Nic x
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Old 20-05-13, 08:45 AM   #12
Amanda Stansfield
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Default Re: How many have tested Negative?

I too tested negative, its was one of the most traumatic experiences of my life!!
MY twin tested positive my sister negative but 3 cousins have/had HD........
I don't think there is ever a right or wrong time to test?? its up to each and every one of us to do it if and when we are ready x

I have lived with HD since i was little, i was late 30's before i decided i needed to know and then the only reason i went was because i needed to have the full picture for my children (they had got to the stage when they wern't just playing kiss chase anymore!!)
When they told me i was going to be ok i wasn't sure if i was to cry scream dance or sit in the corner and weep buckets for my twin brother.....even today i feel cheated that this god forsaken illness is taking my brother from me!! and then i move on to the next day when all is good for a while.....so even though they said i'm gonna be ok they lied!!!!

Live life to the max ....love everyone...... smile and laugh at everything and say BO****KS to the rest thats what I say :)
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Old 20-05-13, 12:24 PM   #13
Badoon82
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Default Re: How many have tested Negative?

Hi every one

Thank you all for your replies!

hope you are all ok x

Kind Regards
Dawn
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Old 11-11-13, 12:27 PM   #14
Tilly
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Default Re: How many have tested Negative?

My hubby tested negative in 2009 and also all of his three cousins. Basically the family were unbelievably lucky in that HD was stopped dead in its tracks at my mother-in-law and her sibling.
However we still have to deal with being in the family, and it has caused some anxiety issues where my hubby went through a stage of panicking if his negative test result was correct. I was told by the genetic counsellor that most negative testers worry about this at some stage.
Xx
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Old 12-11-13, 11:59 AM   #15
Badoon82
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Default Re: How many have tested Negative?

Quote:
Originally Posted by Tilly View Post
My hubby tested negative in 2009 and also all of his three cousins. Basically the family were unbelievably lucky in that HD was stopped dead in its tracks at my mother-in-law and her sibling.
However we still have to deal with being in the family, and it has caused some anxiety issues where my hubby went through a stage of panicking if his negative test result was correct. I was told by the genetic counsellor that most negative testers worry about this at some stage.
Xx
That is such lovely news to read Tilly! so happy for you all :)
hope you dont mind me asking.... was your mother in laws sibling a sister or brother?

take care
Dawn
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Old 12-11-13, 08:31 PM   #16
Tilly
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Default Re: How many have tested Negative?

Quote:
Originally Posted by Badoon82 View Post
That is such lovely news to read Tilly! so happy for you all :)
hope you dont mind me asking.... was your mother in laws sibling a sister or brother?

take care
Dawn
Thanks Dawn,

She has a sister. I'm in a bit of a panic now though as I was reading my husbands results letter and it said the test detected he had 'two cag alleles, of the same size, in the normal hd range.' I thought it was very rare to have two the same size and this can raise a red flag! I read the link below and it says they need to extra testing which requires more blood. I'm in an absolute anxious panic now and I'm going to ring the genetic hospital tomorrow.
Can anyone with any knowledge of the testing process reassure me else I won't sleep tonight
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Old 12-11-13, 08:56 PM   #17
Tilly
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Default Re: How many have tested Negative?

Quote:
Originally Posted by Badoon82 View Post
That is such lovely news to read Tilly! so happy for you all :)
hope you dont mind me asking.... was your mother in laws sibling a sister or brother?

take care
Dawn
Thanks Dawn,

She has a sister. I'm in a bit of a panic now though as I was reading my husbands results letter and it said the test detected he had 'two cag alleles, of the same size, in the normal hd range.' I thought it was very rare to have two the same size and this can raise a red flag! I read the link below and it says they need to extra testing which requires more blood. I'm in an absolute anxious panic now and I'm going to ring the genetic hospital tomorrow.
Can anyone with any knowledge of the testing process reassure me else I won't sleep tonight
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Old 13-11-13, 12:50 PM   #18
Tilly
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Default Re: How many have tested Negative?

The link is http://en.hdbuzz.net / 119
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Old 13-11-13, 02:04 PM   #19
Badoon82
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Default Re: How many have tested Negative?

Quote:
Originally Posted by Tilly View Post
Thanks Dawn,

She has a sister. I'm in a bit of a panic now though as I was reading my husbands results letter and it said the test detected he had 'two cag alleles, of the same size, in the normal hd range.' I thought it was very rare to have two the same size and this can raise a red flag! I read the link below and it says they need to extra testing which requires more blood. I'm in an absolute anxious panic now and I'm going to ring the genetic hospital tomorrow.
Can anyone with any knowledge of the testing process reassure me else I won't sleep tonight
Thank you for getting back to me :)

hope everything is ok, HD is so complicated! :(

Take Care
Dawn
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Old 14-11-13, 04:18 PM   #20
Tilly
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Default Re: How many have tested Negative?

Sorry to post on here earlier, and potentially freak anybody out. I have had a couple of long chats with a consultant and genetic counsellor at the East Midlands clinical genetics hospital where my husbands blood was tested. They went through the testing process with me and have explained in detail how everything is done. They always test two samples and my husbands samples were tested in two different ways as he has the same cag repeat of 18 for both. With the second test they looked for both the cag and ccg to differentiate between the two. They only test a third time if they can't differentiate and also to test a very large repeat.
Hope I can be informative to someone and to learn my lesson of not looking on the Internet for information that I clearly don't fully understand! X
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