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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 16-02-10, 06:23 PM   #11
jillb
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Default Re: First visit to HD Clinic

ooops

meant to say I'm thinking of you Scarlett

love, Jillxx
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Old 16-02-10, 07:44 PM   #12
Diana
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Hi
I often come away from the HD clinic thinking what was the point of that. I think they learn more fom us than the other way sometimes. Still it is good to keep in the system for research, trials etc.

We now never have any meetings or phone consultations without the dreaded notebook!! it often helps looking back over it all later and seeing how things are changing (sometimes even fot the better!!)

It is a hard road but it helps having so many understanding fellow travellers.
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Old 16-02-10, 11:59 PM   #13
Scarlett D.
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Default Re: First visit to HD Clinic

Thank you all so much for you kind and supportive replies - and for answering my questions - it means a lot to me.

I am not feeling as angry about the hospital as I was when I posted, and wonder whether I might have over-reacted a little bit - I mean, it wasn't great, but it could have been worse!

As for the letter - I am still feeling a bit down about it, but still not as bad as I had feared I might. And I do think, deep down, that the Neuro is right in what he put in the letter.

I had a friend with me at the hospital. Yesterday, the friend told me that at one point, he and the neuro were both walking behind me - I didn't know they were there - when I stumbled, and the neuro reached out his arms as though to catch me should I have fallen. I suppose he must have taken things like that into account, when writing the letter.

I am also a bit concerned about what Ruth Sands said about me being "borderline JHD". Ruth also said that the older the person with JHD is, the more similar the symptoms - and progression - are to adult HD. I need to do some online research about JHD, I think.

And again, thank you all for you replies.

Take Care,
Scarlett
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Old 17-02-10, 12:06 AM   #14
Scarlett D.
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Default Re: First visit to HD Clinic

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Originally Posted by just1moreperson View Post
Debbie do you know what your CAG is?
Hiya Matty, nope the neurologist never mentioned this when I got my HD+ results. And at the time, in the hospital, I was feeling pretty emotional, and forgot to ask! But I suppose that would help me work out if my symptoms are likely to be HD - right?

But my next appointment at the HD clinic is not for about 4 or 5 months - do you know if I might be able to get my CAG count over the phone, if I can get through to the Neuro I saw at the clinic??

Take Care,
Scarlett
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Old 17-02-10, 12:16 AM   #15
Scarlett D.
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In terms of stress affecting HD symptoms I can totally confirm, that from my experience, symptoms can get significantly worse. My daughter was in hospital before xmas and we were both totally stressed. My husbands symptoms became much worse. Also over the year since diagnosis his symptoms relating to anxiety and poor sleep have got much better. I do feel that when things become calmer the symptoms ease. I hope this will be the case for you.
Thanks for that, Colette - that is very helpful to hear, because that is exactly how I feel! My gut feeling has always been that I am in the early stages, but that my symptoms when I get stressed.

Also, my symptoms were there before I started going through the stress of being tested. It was in fact a family member who first noticed them - and as soon as I started to consider being tested, my symptoms sort of tripled, which I guess was the stress! And now that the stress of testing is over, they have sort of reduced to what they were before all that.

Take Care,
Scarlett
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Old 17-02-10, 12:33 AM   #16
Scarlett D.
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Hi Scarlett

Really sorry that your appt did'nt go as well as you would like

I think a neurologist who is used to seeing people with HD will recognise the symptoms very quickly so i would imaginecan be trusted.

Weirdly,when i was diagnosed it was by accident when I took my daghter for her test result. After an agonising wait while she went in with her freind, I went in to join them, thankfully she was negative.

when we got home I had a letter offering us support with our RCA as I was in early stages!!!!!! I truly understand that reading it in black and white is so different to years of wondreing when it will happen.
This was nearly 8 years ago.

please forgive dreadful typing etc. Main reason I dont post much now.
too shattered to correct also keep deleting everything
Thanks Jill, for confirming what I already thought about the neuro - that he was probably correct in his assessment. I questioned it because it seems that almost every hospital has a different way of doing things, and I wasn't sure whether the way he had done it was usual or not.

Wow, I can't believe the way you got diagnosed by accident like that! It must have been one heck of a shock for you hun! Poor you.

And no need to apologise about the typing, I understand. Mine is OK - for now! - but my handwriting is apalling, takes forever and is rarely readable!


Take Care,
Scarlett
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Old 17-02-10, 12:38 AM   #17
Scarlett D.
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Originally Posted by Diana View Post
I often come away from the HD clinic thinking what was the point of that. I think they learn more fom us than the other way sometimes. Still it is good to keep in the system for research, trials etc.
Yes, Diana, I agree! And I am also thinking that however good / bad an HD clinic is - it is probably also a good reality check, in the sense that we can check and see if our symptoms really are as much worse - or better - as we thought.

Take Care,
Scarlett
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Old 17-02-10, 01:39 AM   #18
just1moreperson
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Default Re: First visit to HD Clinic

I don't know hun, they may be able to post it to you.
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Old 17-02-10, 08:36 AM   #19
colettew
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Default Re: First visit to HD Clinic

Scarlett regarding the JHD thing I really dont think it applies. Your symptoms started well over age 20. Yes the brain is affected before but my understanding is that the date of onset is when the physical symptoms start. I'm no expert but this is my understanding. I don't think Ruth would have said this if she realised how this would upset you. There are so many different factors affecting age of onset and severity of symptoms. The scientists are still trying to understand it all themselves. I try not to look ahead too much as it just stresses me out and none of us know what the future holds (HD or no HD). All we can do is keep as healthy as we can and do all the things that we know help HD.
Loads of love to you - it is really hard dealing with all this stuff.
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Old 17-02-10, 02:32 PM   #20
just1moreperson
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Default Re: First visit to HD Clinic

You have to remember that there's no huge difference. If you take two people aged 19 and 21, both just diagnosed as symptomatic for JHD and HD. The difference between the two over the years wont be a lot, it's not like there's a border that once you cross you have completely different symptoms and progression. It's more a case of you may have a mix of both HD and JHD... which is called early onset HD.

So don't worry about classing it as JHD or HD, it doesn't matter at the age you're at Deb. If you were 15 and had symptoms, of course it would matter then. The symptoms would be 100% JHD and you would get the rigid movements etc.
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