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General HD topics Open forum for all other issues concerning Huntington’s disease

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Old 08-09-17, 12:35 AM   #1
Je55
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Join Date: Sep 2017
Location: Devon
Posts: 2
Default Desperate to hear some good news

Hi,
My mum suffers with HD. I'm waiting for my 2nd letter, so that I can go to my 2nd genetic councilling session. At the moment, I'm feeling like I need to get tested. Feeling very stressed with day to day life when every time I drop something, forget something, have a mood swing, even sometimes involuntary movement.
I'm desperate to hear to positive story's of when people have gone through with getting tested and it has been good news.

Sorry I'm a bit rubbish at this whole forum thing - but what a brilliant place to be able to speak to people that know how you feel.

Jess x
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Old 08-09-17, 05:24 PM   #2
Cupcake
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Join Date: Mar 2011
Location: East Anglia
Posts: 1,473
Default Re: Desperate to hear some good news

hi jess

Welcome to the board, I am sorry to read your mum has HD and you are at risk.

No doubt your mind is all over the place with what the right thing is to do, and only you will know the way forward. My hubby had HD and died 2 years ago, we have 2 sons in their 20's both untested as yet. The eldest switches from wanting to be tested to not, and the youngest is not going to bother. He will try and make sure there are no children born at risk and will go down the testing embryo route.

I think you will find a couple of good stories in the testing link on the board, I have been a member of the board now for about 5 yrs and there are some 🙂, my only advise to you, is go for the counselling, it can be lengthy, but it is there to protect you and prepare you for the outcome, which ever way it falls. Good luck xxxxx
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Old 09-09-17, 10:57 AM   #3
Je55
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Join Date: Sep 2017
Location: Devon
Posts: 2
Default Re: Desperate to hear some good news

Thank you for getting back to me...
Yes I have had the first counselling session. I'm very nervous but think I need to do it.
I shall definitely have a look at the other sections of the forum. Thank you! X
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Old 14-09-17, 04:27 PM   #4
Gabby
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Join Date: Jan 2015
Location: Berkshire
Posts: 331
Default Re: Desperate to hear some good news

Quote:
Originally Posted by Je55 View Post
Hi,
My mum suffers with HD. I'm waiting for my 2nd letter, so that I can go to my 2nd genetic councilling session. At the moment, I'm feeling like I need to get tested. Feeling very stressed with day to day life when every time I drop something, forget something, have a mood swing, even sometimes involuntary movement.
I'm desperate to hear to positive story's of when people have gone through with getting tested and it has been good news.

Sorry I'm a bit rubbish at this whole forum thing - but what a brilliant place to be able to speak to people that know how you feel.

Jess x
Hi Jess ,
It is hard going through the process and of course some test negative as well as positive even if they have thought they had symptoms . My hubbie tested positive 9 years ago now and his sister negative to be honest she struggled as much with the negative result as we did with the positive . Counselling is definitely the way to go . Only you know if you want to test or not . Good luck

Gabby
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Old 26-09-17, 04:09 PM   #5
jacqueline
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Join Date: Feb 2008
Posts: 43
Default Re: Desperate to hear some good news

Quote:
Originally Posted by Je55 View Post
Hi,
My mum suffers with HD. I'm waiting for my 2nd letter, so that I can go to my 2nd genetic councilling session. At the moment, I'm feeling like I need to get tested. Feeling very stressed with day to day life when every time I drop something, forget something, have a mood swing, even sometimes involuntary movement.
I'm desperate to hear to positive story's of when people have gone through with getting tested and it has been good news.

Sorry I'm a bit rubbish at this whole forum thing - but what a brilliant place to be able to speak to people that know how you feel.

Jess x
Hi Jess,
We are all different and only you know what you would like to do.
You can start the process and then stop mid stream if you want to. There no pressure form anyone and they will never contact you to persuade you of anything.
You can even go to the end and still not look at the results if you don't want to.
You have to remember though once you know you cant unknow.
Lots of people on here have felt symptomatic but have turned out to be negative. Anxiety can play a big part in feeling symptomatic. Good luck. We will still be here though.
I have been on here for nine years now but had my posts reset to nil.
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