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Research, drugs, treatment, new diagnosis Forum for medical issues, and for the recently diagnosed (and families)

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Old 26-11-16, 08:35 AM   #1
Geranium
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Join Date: Aug 2016
Posts: 8
Default H recently diagnosed

My husband recently found out he had a reading of 40, which is borderline HD+, apparently.

His neurosurgeon treated him like an idiot (I have posted about this before) and he is now totally opposed to seeing anyone or getting any advice. He even had a referral to the top centre in London but he cancelled it.

This anger inside him caused by the way the neurosurgeon treated him is consuming him all the time and is ruining his life. He is convinced he has no symptoms and therefore doesn't believe the diagnosis anyway, and he is furious at being told he shouldn't drive any more.

Basically, the neurosurgeon has ruined our lives by treating him the way he did. H has complained to the GMC but nothing happened. He has written to his registered GP, whose rather watery response made him feel she was taking the neurosurgeon's side. He has a telephone consultation lined up with a more understanding GP than his registered one, but I fear he will back out of discussing the most important issues and simply ask her how he can get his driving licence back.

According to the NHS website, there should have been genetic counselling before he even got tested - instead, he was simply sent down the corridor for a blood test at his first consultation (which I also attended).

Now he has built up a complete distrust for all medical professionals and simply believes they are pigeon-holing him and trying to justify the neurosurgeon's diagnosis.

He has talked about getting a second opinion on his results, which I was hoping he would do in order to gain some clarity and in the hope that he would be lucky enough to find one who would treat him like a human being, but his distrust is now so extreme that he now does not want to do so.

He has children (including one with me, now in her 20s and getting married in 2 years' time) and grandchildren and categorically states that he 'would never ruin their lives by telling them'.

Even if H doesn't want answers and information, I feel I do need them. It's really hard seeing H so angry all the time. But I don't want to go behind his back or against his wishes. A tough one. Has anyone else had a similar experience?
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Old 27-11-16, 01:36 AM   #2
Melody
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Join Date: Jun 2014
Location: South East
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Default Re: H recently diagnosed

Quote:
Originally Posted by Geranium View Post
My husband recently found out he had a reading of 40, which is borderline HD+, apparently.

His neurosurgeon treated him like an idiot (I have posted about this before) and he is now totally opposed to seeing anyone or getting any advice. He even had a referral to the top centre in London but he cancelled it.

This anger inside him caused by the way the neurosurgeon treated him is consuming him all the time and is ruining his life. He is convinced he has no symptoms and therefore doesn't believe the diagnosis anyway, and he is furious at being told he shouldn't drive any more.

Basically, the neurosurgeon has ruined our lives by treating him the way he did. H has complained to the GMC but nothing happened. He has written to his registered GP, whose rather watery response made him feel she was taking the neurosurgeon's side. He has a telephone consultation lined up with a more understanding GP than his registered one, but I fear he will back out of discussing the most important issues and simply ask her how he can get his driving licence back.

According to the NHS website, there should have been genetic counselling before he even got tested - instead, he was simply sent down the corridor for a blood test at his first consultation (which I also attended).

Now he has built up a complete distrust for all medical professionals and simply believes they are pigeon-holing him and trying to justify the neurosurgeon's diagnosis.

He has talked about getting a second opinion on his results, which I was hoping he would do in order to gain some clarity and in the hope that he would be lucky enough to find one who would treat him like a human being, but his distrust is now so extreme that he now does not want to do so.

He has children (including one with me, now in her 20s and getting married in 2 years' time) and grandchildren and categorically states that he 'would never ruin their lives by telling them'.

Even if H doesn't want answers and information, I feel I do need them. It's really hard seeing H so angry all the time. But I don't want to go behind his back or against his wishes. A tough one. Has anyone else had a similar experience?
Hello Geranium, not sure we've met before. Just had a quick look back at your earlier posts.

My hubby is also cag 40.... was advised to take the driving assessment (6 years ago now) after taking the HD test and being diagnosed symptomatic. He failed, license withdrawn immediately. He was so angry at the time, but in all honesty it was the right thing to do for everyones safety.

Hubby cancels appointments here there and everywhere.. He did attend the annual HD clinic at Queens Square this year, but didn't like what was said (it was a different Doctor) and said he won't go again.. We will see.

It is like treading through a mine field at times and in my case hasn't got any easier.

My hubby gels with some Doctors and not others... Some HD sufferers can be a law unto themselves and it makes it so hard for the family to do whats right.

Hard when there are children and you are a second wife. In my opinion they should be told. That doesn't mean that you have to go down that route but try to speak to H about the implications for them and how knowledge may help their future decisions.

Wishing you all the best. Take care.
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Old 30-11-16, 08:31 AM   #3
Geranium
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Default Re: H recently diagnosed

Thanks for your reply, Melody. It sounds like yours is a very similar situation. It's good to know there are others going through the same thing, though it doesn't make it any easier. As you say, we'll have to see...
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Old 13-03-17, 06:54 PM   #4
Geranium
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Default Re: H recently diagnosed

Now, several months down the line, my HB has today obtained a 2nd opinion as he has never accepted the outcome of the first awful experience he had. Of course, the 2nd neurologist just confirmed the first, and now my HB thinks they are just rubber stamping him and backing each other up and he still doesn't believe it.

HB is in a dreadful place now. Angry, mentally exhausted by the whole process, sleeping a lot, eating rubbish as comfort. Over the last 4 months we have somehow managed to remain fairly cheerful but this has set us right back. I just want to cry all the time. HB has so far had very few symptoms at age 73: he is quite fidgety but is perfectly able to function independently, he is still working (we work from home) etc etc, although he has stopped driving. And I find comfort in the fact that as it is generally a slow progression, it may not affect the rest of his life as much as an earlier onset would have.

But when I read what other people are going through, I just don't know what to do, where to turn, how to handle it all... HB has told me not to tell ANYONE, least of all our (adult) children (HB 2, plus my 1 with him), although I have confided in my sister out of desperation. But I can't offload on her all the time, that wouldn't be fair.

You see, the worst for me is the fact that he won't contemplate telling the children as he doesn't want them to have the sword of damocles hanging over their heads like he has now. I get that, but at the same time our daughter will be wanting kids of her own in the next few years... I can't see how I could let her go ahead with that without telling her... but how do you ruin someone's life by doing that??? But how can I live with myself if I don't???
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Old 14-03-17, 08:04 AM   #5
elessi
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Join Date: Feb 2017
Location: Cornwall
Posts: 26
Default Re: H recently diagnosed

i can understand about the children, we have 2 under 6 hubby's kids from before thre are 5 from 39-29 and they have been told. one of them knew before we did as her uncle was diagnosed first. we had testing done 2 years ago 40cag repeats bad moodswings and temper issues. mirtazipine has been a godsend. we talked to the children and they have tested negative relieved as we have 9 grandchildren. ours are too young to test, they have a 50-50 chance of it. i would talk to them about it but explain that hd can make you a bit thoughtless towards others although their dad wants to protect them it would be nice for them to have a choice. i look at my kids and wonder every day if they could get it. please dont let him take away your choices, once over 18 the test can be done it could give you all peace of mind. good luck x
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Old 24-03-17, 10:43 PM   #6
Dolphin
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Join Date: May 2008
Location: Surbiton
Posts: 651
Default Re: H recently diagnosed

Hi Geranium

Maybe you could take some advice from your local HDA specialist ?

I am not on the board much so don't know where you live but there may be a local group that meets up. Trouble shared can be a trouble halved.

It would give you someone else to turn to too apart from your sister.

I think you will want your children to be able to take informed decisions and they need to be able to work through the shock of finding out too. I imagine they must also be a bit concerned about their dad's behaviour.

It does progress slowly particularly if the onset is later in life so you don't have to tell them next week !

Dolphin
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Old 27-03-17, 10:11 PM   #7
tammie
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Join Date: Dec 2010
Posts: 11
Default Re: H recently diagnosed

It sounds like your husband needs time to calm down and if him or you need it call the sarmaritains. I was 18 when I was told about my dad having it, I was upset of not being told when it first happened but I just needed some time too. I done some research, then decided to get tested, which was positive. I have never regretted getting tested. I would have had more than one child, which was the best mistake of my life finding out I was pregnant, but knowing it would never happen again so he has been the best thing ever. This test just allows us to make informed choices of the future. Hope this helps!!

Quote:
Originally Posted by Geranium View Post
My husband recently found out he had a reading of 40, which is borderline HD+, apparently.

His neurosurgeon treated him like an idiot (I have posted about this before) and he is now totally opposed to seeing anyone or getting any advice. He even had a referral to the top centre in London but he cancelled it.

This anger inside him caused by the way the neurosurgeon treated him is consuming him all the time and is ruining his life. He is convinced he has no symptoms and therefore doesn't believe the diagnosis anyway, and he is furious at being told he shouldn't drive any more.

Basically, the neurosurgeon has ruined our lives by treating him the way he did. H has complained to the GMC but nothing happened. He has written to his registered GP, whose rather watery response made him feel she was taking the neurosurgeon's side. He has a telephone consultation lined up with a more understanding GP than his registered one, but I fear he will back out of discussing the most important issues and simply ask her how he can get his driving licence back.

According to the NHS website, there should have been genetic counselling before he even got tested - instead, he was simply sent down the corridor for a blood test at his first consultation (which I also attended).

Now he has built up a complete distrust for all medical professionals and simply believes they are pigeon-holing him and trying to justify the neurosurgeon's diagnosis.

He has talked about getting a second opinion on his results, which I was hoping he would do in order to gain some clarity and in the hope that he would be lucky enough to find one who would treat him like a human being, but his distrust is now so extreme that he now does not want to do so.

He has children (including one with me, now in her 20s and getting married in 2 years' time) and grandchildren and categorically states that he 'would never ruin their lives by telling them'.

Even if H doesn't want answers and information, I feel I do need them. It's really hard seeing H so angry all the time. But I don't want to go behind his back or against his wishes. A tough one. Has anyone else had a similar experience?
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