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Old 02-04-18, 08:28 AM   #1
Michaelargue
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Join Date: Apr 2018
Location: North East england
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Default Nervous about up and coming test

Hi everyone.
I've got a test on the 5th of April for HD. My nana passed away with, my uncle did too, and his sister has it and also one of his son's. My family have been very open about this issue all my life.
But as the date gets close it's starting to play on back of my mind and when something happens I start thinking is this the start of it?
I've had no counselling for this as family are close and open but sometimes feel I can't open upto them as don't want to put undue pressure onto them.
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Old 03-04-18, 11:04 AM   #2
Gabby
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Default Re: Nervous about up and coming test

Quote:
Originally Posted by Michaelargue View Post
Hi everyone.
I've got a test on the 5th of April for HD. My nana passed away with, my uncle did too, and his sister has it and also one of his son's. My family have been very open about this issue all my life.
But as the date gets close it's starting to play on back of my mind and when something happens I start thinking is this the start of it?
I've had no counselling for this as family are close and open but sometimes feel I can't open upto them as don't want to put undue pressure onto them.
HI Michaelargue Im sure you are feeling nervous , glad your family are able to talk though . Is this the actual blood test or first appointment at genetic clinic ?
I assume someone is going with you . Will be thinking of you .

Gabby
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Old 03-04-18, 06:23 PM   #3
Cupcake
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Location: East Anglia
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Default Re: Nervous about up and coming test

Hi,

Just wanted to say I think it will be just the first appt to chat about everything, they never just do the blood test without some counselling, even if the blood is taken when you go there is no rush to get the result.

Ask for more time and someone to chat through it all, like you say your family are very open, but you donít reslly want to burden your thoughts on them. Remember itís your Life, your time and donít rush the result. You need to be fully prepared for the result which ever way it goes, everyone is different, some need to know and then go on to make sure they do everything they want, before they canít, some need to know, for peace of mind, and sometimes donít forget if you donít have it and siblings do, that is hard because you may carry guilt. The counselling helps you talk through all these things and to be able to deal with all.

My hubby did not cope with his diagnosis, it broke him. Because of the way it affected him, he is no longer with us, and was such a strong man before, my two sons are resisting the test, because at the moment they are afraid they wonít be able to cope with the result if positive. For me I bury my head in the sand, I dread to think they may have it.

Take your time. X
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Old 03-04-18, 08:01 PM   #4
Michaelargue
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Default Re: Nervous about up and coming test

I'm not sure what they will do. It's all been a bit of a blur and nothing in letter or any conversations with the clinic. To be fair i wouldn't mind them taking bloods straight off. Will defo need some help with the counselling but also want answers. I have 2 young boys (5) &(3) So if i am HD+ I want them checking. It's the after care and after support if i am HD+ that concerns me as I'm the bread winner in our house hold and then there's the boys and my wife. I not sure how they will cope in the long run. I have so many questions but very little answers which I hate.
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Old 04-04-18, 10:49 AM   #5
shiraz
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Default Re: Nervous about up and coming test

Hopefully some of your concerns will be addressed at your appointment tomorrow. As a rule, you will have some counselling sessions before an mri/blood test - although my husband refused counselling and just wanted the test done, but he was symptomatic so the neurologist was quite happy to do this. If you do test positive, your children will not be able to test until they are 18 - they simply won't test them earlier. The disease progresses so differently for everyone, for instance some display more cognitive issues than physical problems and chorea. My husband worked til he was 60 so....he still led a full and productive life. But with regard to aftercare and support we have pretty much just been left to get on with it apart from having mental health checks and our doctors being very helpful. Hope all goes well for you tomorrow.
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Old 04-04-18, 12:59 PM   #6
Michaelargue
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Default Re: Nervous about up and coming test

Thank so much all of yous for your comments and and will keep you all posted on how it all goes.

Michael.
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Old 05-04-18, 06:28 PM   #7
Cupcake
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Default Re: Nervous about up and coming test

Hi

Just take one day at a time. Our boys were 7 and 5 when we learnt of HD in the family. Hubby decided not to test. We did bury our head in the sand, but we had a great time bringing our sons up and hubby had a good career in the RAF. Life is for living and although there is 50/50 of HD, there is loads you can do. Talking to the counsellor will help you and shiraz is tight boys canít be tested. Xx
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Old 05-04-18, 07:53 PM   #8
Michaelargue
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Default Re: Nervous about up and coming test

Good evening everyone.
Today went well and was a couciling session. She talked me through how the gene and cromazon stuff works. Taked me through my options. Talked about after care and also stuff to think about befor having the test and also befor getting results if i do go ahead with the test. I'm getting another session in about 6 weeks which at the end of I'll be asked again if i want to go ahead with the test and then will be 4 week wait for the results.
Thanks again everyone
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Old 07-04-18, 05:11 AM   #9
Dolphin
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Default Re: Nervous about up and coming test

Hi

Good luck with it

The really good thing about the sessions is you can ask the sort of questions that you don't want to worry the family with - the really scary stuff

Dolphin
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Old 14-04-18, 11:52 PM   #10
Cupcake
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Default Re: Nervous about up and coming test

I am glad it well. 🙂
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