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Old 05-03-17, 12:00 AM   #2
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Join Date: Sep 2015
Posts: 237
Default Re: Feeling lost - CVS without confirmed diagnosis (or history)

Originally Posted by JaneD View Post
Hi everyone

Have spent a while reading and really upliffted by reading stories on here and how everyone helps each other out.

Our world has been turned upside down over the last week or so

Weve known for a while my hubby was at risk of HD, but it's always been a vague gray cloud hanging out there. His father left his mum with 2 young boys (he doesn't really remember him) and she brought them up herself. His mum told us both before we got married that his father's mother had HD and so he was potentially at risk. I really respect her for telling us before we got married, can't have been easy at all for her and pleased to say we have a great relationship (which is great caus hubby has always been sensisitive about the rejection he feels from his father leaving). The thing is that was pretty much all she knew and she hasn't heard from him for years - slimy lowlife.

Anyway, we've just found out that I'm pregnant. Should have been such a happy time but it's really just mixed emotions. Thankfully we had talked about it a bit, but the timing has just thrown everything off as we weren't expecting it. But I've seen how much pain it causes him worrying about it and what will happen to me, and we're absolutely together in that we don't want to out our children through that.

Managed to get an appointment sorted quickly with the GP who referred us to see a counsellor. He talked us through the various options, but apparnetky it's complicated by the fact that we don't know if his father was affected and there's no way of finding out. He asked if it would be possible to get a blood sample, but have no idea how we could track him down, or if he would allow it (which apparently makes some of the tests impossible).

So it basically seems like our only option is for him to get a test (and to do it quickly), and then to test the baby and see if it's ok. Don't want to think about what will happen if not. He has never wanted the test and desperately didn't want him to have to find out (although clearly if a baby was found to be affected that would be bad news for him). But was hoping they could just test the baby and go from there.

Sorry for long message. Appreciate any ideas people have. We're just at wits ends. And really worried for him if the test gives the wrong result. Thansks so much.
Hello Jayne.....just wanted to say welcome to the MB. Sometimes, replies to a post do not come forward, because others do not perhaps know what advice to offer, or feel uncertain as to how to respond, as in my case. I have read your post several times and find myself still unable to offer you anything that could possibly help you in this really distressing time. You, yourself have pointed out options....have received counselling and will have much soul-searching to endure. Sadly, the time comes when HD is present somewhere in our lives, when some decisions made previously (such as whether to test or not) have to be 'revisited'.!The 'goalposts' change and sometimes, decisions may have to change too. Many will say there will be no right or wrong decisions made in the context of HD.....just extremely hard, often heartbreaking decisions....but personal to each and everyone involved. This message board serves to support, offer advice when we can, encourage others to seek appropriate help from professionals involved in HD etc.etc. and sometimes we can only understand and listen, but not know how to always offer any more.

I do hope, however, that there may be others who may be able to respond to you, but should this not happen, do still stay 'on board ' and share your thoughts, emotions, hopes and fears, may even help you both reach any decisions that may, or may not even, need to be made, just by sharing them here.

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