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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 14-04-16, 12:34 AM   #1
JessicaG
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Join Date: Mar 2016
Posts: 4
Default Test results are in and I'm in shock

So the results are in I e been aware of my risk of HD for 19 years and my father is near the end of his fight:( and brother and cousins have been diagnosed HD positive, I tested because I needed an answer I needed to k own if my poor balance and odd movement was HD is my sometimes quick temper and HD I have fibromyalgia so have some brain fog moments and memory loss almost everyday but is it HD ? I needed to know, I needed to plan for a future of impending illness, to prepare my husband and children and the list of whys go on.

Today is results day so
My mum came down from up country last night and hubby and I with mum are collecting my best friend as I decided very unlike me I needed cheerleaders prahaps that's true prahaps I needed to not have to give them
The bad news myself. But I
Ready for bad news I know it's bad it's my luck my health has sucked since I was born multiple serious allergies and asthma then fibromyalgia and ME and I just deal with all that so why would HD be any different I just need to know.

The words first words from the consultants mouth after fussing my assistance dog which was obviously the most important job of the day :) he is super cute lol. We're it's good news s she handed me a piece of paper full of writing all I saw were the numbers near the point of her pen 19 19 before being leaped upon by my mother the rest is a blur of tears and the nausea I felt since yesterday somehow got more intense my poor dog was probably wondering what on earth was going on as I lean to hug hubby like I've not seen him for a year and I find myself suffocating on my friends hair as I turn for air as she jumps in for a hug too.
The entire day has been a blur we have not done much we hit the shops didn't buy anything not really other than a few items from lush and a drink :) I
Still smiling I remember I called my brother first , he was waiting for me the poor guy couldn't work out what I was saying amongst the crying and banshee wailing but eventually said so your good yeah ?? Lol oh my gosh I was good yes I'm good I'm so good, my children of which I have 4 are safe. I wish I could deliver the same news to my brother but I will make this promise, I will always be there for him his wife and his 2 young sons and I will always be in support of all of the families here, thank you so so
Much for posting your stories I have needed them on and off for
Many years cxx and you have got me through many tough times with family and my own testing.xxx here's to a cure xxxx and here's to your loved ones testing negative xxxx
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Old 14-04-16, 12:43 AM   #2
Melody
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Join Date: Jun 2014
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Posts: 341
Default Re: Test results are in and I'm in shock

Hi Jessica,

I am so very pleased for you and your children. It must be a huge weight off your mind....I know HD is still in your life with other family members which is always tough, but I am so pleased for you.

Take care x
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Old 14-04-16, 05:31 AM   #3
toosh
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Default Re: Test results are in and I'm in shock

Quote:
Originally Posted by JessicaG View Post
So the results are in I e been aware of my risk of HD for 19 years and my father is near the end of his fight:( and brother and cousins have been diagnosed HD positive, I tested because I needed an answer I needed to k own if my poor balance and odd movement was HD is my sometimes quick temper and HD I have fibromyalgia so have some brain fog moments and memory loss almost everyday but is it HD ? I needed to know, I needed to plan for a future of impending illness, to prepare my husband and children and the list of whys go on.

Today is results day so
My mum came down from up country last night and hubby and I with mum are collecting my best friend as I decided very unlike me I needed cheerleaders prahaps that's true prahaps I needed to not have to give them
The bad news myself. But I
Ready for bad news I know it's bad it's my luck my health has sucked since I was born multiple serious allergies and asthma then fibromyalgia and ME and I just deal with all that so why would HD be any different I just need to know.

The words first words from the consultants mouth after fussing my assistance dog which was obviously the most important job of the day :) he is super cute lol. We're it's good news s she handed me a piece of paper full of writing all I saw were the numbers near the point of her pen 19 19 before being leaped upon by my mother the rest is a blur of tears and the nausea I felt since yesterday somehow got more intense my poor dog was probably wondering what on earth was going on as I lean to hug hubby like I've not seen him for a year and I find myself suffocating on my friends hair as I turn for air as she jumps in for a hug too.
The entire day has been a blur we have not done much we hit the shops didn't buy anything not really other than a few items from lush and a drink :) I
Still smiling I remember I called my brother first , he was waiting for me the poor guy couldn't work out what I was saying amongst the crying and banshee wailing but eventually said so your good yeah ?? Lol oh my gosh I was good yes I'm good I'm so good, my children of which I have 4 are safe. I wish I could deliver the same news to my brother but I will make this promise, I will always be there for him his wife and his 2 young sons and I will always be in support of all of the families here, thank you so so
Much for posting your stories I have needed them on and off for
Many years cxx and you have got me through many tough times with family and my own testing.xxx here's to a cure xxxx and here's to your loved ones testing negative xxxx
Fantastic news. Thrilled to bits for you. Especially your 4 children xx
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Old 14-04-16, 11:41 AM   #4
shiraz
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Default Re: Test results are in and I'm in shock

Fantastic news for you, and your heart must be filled with joy knowing that your children will also be safe from hd. A huge weight has been lifted from you - one less battle you need to fight. Good luck Jessica with your other health issues and give your assistance dog a big hug from me x
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Old 18-04-16, 11:02 AM   #5
Amanda Stansfield
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Location: Pendle Lancashire
Posts: 247
Default Re: Test results are in and I'm in shock

Quote:
Originally Posted by JessicaG View Post
So the results are in I e been aware of my risk of HD for 19 years and my father is near the end of his fight:( and brother and cousins have been diagnosed HD positive, I tested because I needed an answer I needed to k own if my poor balance and odd movement was HD is my sometimes quick temper and HD I have fibromyalgia so have some brain fog moments and memory loss almost everyday but is it HD ? I needed to know, I needed to plan for a future of impending illness, to prepare my husband and children and the list of whys go on.

Today is results day so
My mum came down from up country last night and hubby and I with mum are collecting my best friend as I decided very unlike me I needed cheerleaders prahaps that's true prahaps I needed to not have to give them
The bad news myself. But I
Ready for bad news I know it's bad it's my luck my health has sucked since I was born multiple serious allergies and asthma then fibromyalgia and ME and I just deal with all that so why would HD be any different I just need to know.

The words first words from the consultants mouth after fussing my assistance dog which was obviously the most important job of the day :) he is super cute lol. We're it's good news s she handed me a piece of paper full of writing all I saw were the numbers near the point of her pen 19 19 before being leaped upon by my mother the rest is a blur of tears and the nausea I felt since yesterday somehow got more intense my poor dog was probably wondering what on earth was going on as I lean to hug hubby like I've not seen him for a year and I find myself suffocating on my friends hair as I turn for air as she jumps in for a hug too.
The entire day has been a blur we have not done much we hit the shops didn't buy anything not really other than a few items from lush and a drink :) I
Still smiling I remember I called my brother first , he was waiting for me the poor guy couldn't work out what I was saying amongst the crying and banshee wailing but eventually said so your good yeah ?? Lol oh my gosh I was good yes I'm good I'm so good, my children of which I have 4 are safe. I wish I could deliver the same news to my brother but I will make this promise, I will always be there for him his wife and his 2 young sons and I will always be in support of all of the families here, thank you so so
Much for posting your stories I have needed them on and off for
Many years cxx and you have got me through many tough times with family and my own testing.xxx here's to a cure xxxx and here's to your loved ones testing negative xxxx

what a wonderful thing to read on a Monday morning i'm so so happy for you darling x
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Old 21-04-16, 03:38 AM   #6
BDC0000l
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Default Re: Test results are in and I'm in shock

Fantastic News, I am so happy for you and your children. I am too going through the test procedure. I have my test on the 12th of May, I feel I have the weight of the world on my shoulders at the moment. Your good news has given me hope for me and my children. Thanks for sharing.....
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Old 21-04-16, 03:52 PM   #7
Scooby
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Default Re: Test results are in and I'm in shock

The best news, all the best for the future hun.

Sue xx
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Old 21-04-16, 05:51 PM   #8
Gabby
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Default Re: Test results are in and I'm in shock

so pleased for you x
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Old 21-04-16, 07:27 PM   #9
banda
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Default Re: Test results are in and I'm in shock

Fantastic news.....so pleased for you. x
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