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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 15-02-10, 10:39 PM   #1
Scarlett D.
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Default First visit to HD Clinic

A couple of weeks ago, I had my first appointment at an HD Clinic (in the hospital where I was tested). My main aim was to try and find out whether or not my symptoms are caused by HD, or by stress - or both!

First I saw the head Neurologist...I wasn't in there long, and so didn't get to ask about the stress / HD thing, but he asked what symptoms I was having, and I explained - and he prescribed me with an anti-depressant (Trazodone) - not because I am depressed, but because it is supposed to help with my anxiety / sleeping.

Next I saw a Neuro-Phsychiatrist. I wanted to see him because I have had a very difficult life - apart from HD - and was trying to ascertain whether or not some of my psychological problems, are from my past, or from HD. We talked for about an hour, after which he said something non-commital, like "Some of this could be HD, but you have also had a traumatic life." Made me angry, because I felt like he didn't really know, and was just fobbing me off!

Lastly I saw Ruth Sands (from the HDA), who was lovely and very helpful! I know she is an RCA and not a Dr., but due to the Neurologist having been in such a rush (because he had had to take me to the psychiatrist, before the psych went home), I had a ton of questions to ask her! About the stress / HD thing, she said it is hard to tell in the early stages. She said I probably wouldn't need any meds yet...BUT, she also said that the HD gene is deemed to be active a few years before people become symptomatic, and that due to my age (25), I would be "borderline JHD", if my symptoms are from HD and not stress. I didn't know that HD starts before the symptoms...has anyone else heard of this??

Anyway, after that I felt a bit frustrated...I mean, I understand why it would be hard to work out the stress / HD things, but I think I had built my hopes up too much and then felt let down.

But then today I received a copy of a letter from the hospital to my GP (it is their policy to copy such letters to patients). It was from the Neurologist I saw at the Clinic, and he said that I had been showing "clinical features of HD", and also that all the symptoms which I described are "typical of the early stages of HD".

I really don't know how I feel about all this yet, but I certainly don't feel as bad as I had feared I might. On the one hand, it is a relief, to have it confirmed to me, one way or another. On the other hand, it is still a shock and a big blow, even though I think I have always known it was HD, really.

I have a question...do you guys reckon that the Neuro is necessarily right, because he only saw me for about 15 mins, and so most of what he wrote in the letter was based on what I said about my symtpoms - as he didn't ask to see them.

Anyway, I am sorry for this post being so "long and ranty", but I think I jsut need to have a vent and get it all off my chest.

Take Care,
Scarlett
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Old 15-02-10, 11:16 PM   #2
waz1980
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Default Re: First visit to HD Clinic

Hi

I have read your post and im not sure what to say really. It appears on the face of it that you are coping ok?
I have heard that the HD gene damages the brain before any symptoms become apparent. This is why they are doing the track-hd programme, part of euro-hd, to find bio markers to find out exactly when the disease starts so they can treat it with a drug/gene silencing from then.
Having spoken to several people in the HD world, ie doc, relatives of those with HD and people from the support groups, I think that they can tell when people are early stage. I was told by several people that I was not displaying any symptoms, you seem to have been told the opposite, so I guess it must be hard to hear it.
Are you registered for euro-hd?? Which HD clinic are you going to?
Myself and my mum are with St Georges in London and they seem really good.
My mum has been to the dietician and now she is on a high calorie diet, but has stopped the creatine and most of the other supplements I have given her. No amount of reasoning is going to change her mind! Creatine appears to be really good and may slow progression down.

Looking forward to meeting you in a couple of weeks at the conference where we can chat more and get the info we need.

Take care

Wayne
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Old 15-02-10, 11:33 PM   #3
jaq
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Default Re: First visit to HD Clinic

Oh Scarlett

It is just exhausting everything seems to involve a fight for information doesn't it .

I have said this before but a friend of mine was diagnosed with breast cancer last year and while it has been awful as soon as she was diagnosed a whole network of dedicated doctors , nurses and support is put into place.

With HD we just don't have this and treatment / support seems to vary from region to region.

I think we all have twitches and stumbles and lapses of memory and it is hard not to put in down to HD even without a positive diagnosis.

Would it be worth keeping some sort of diary what you feel your symptoms are whether they are better or worse if you are tired stressed had too much coffe etc etc and you can go armed with this information on your next appointment . It might be worth making a list of any questions you have ready to take with you as it is easy to forget in the pressure of an appointment especially when the consultants are in a rush. get the paper out and work through the questions you have . You could even leave the questions with them if they are pushed for time?

Sorry if thisis stating the obvious but I know it is how I dealt with an opperation I had to have some years ago.

With regards to the psychological problems I am not the best person to offer advice as you know I am still waiting but in my opnion if they say that some things can be down to a 'traumatic life' and whose in an HD family isn't then they should surely be offering you support to deal with that side of things as well .

Take care

Jaq
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Old 15-02-10, 11:34 PM   #4
Scarlett D.
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Default Re: First visit to HD Clinic

Wayne, thank you for your reply.

And as for how I feel, I am feeling pretty emotional about it all, but it's not as awful as I'd feared (although this will probably change by tomorrow!). I felt pretty choked up this morning, when I first read that letter, and have been feeling quite low today. And yes, Wayne, as you said it is "hard to hear" this - but, I think deep down, I always sorta KNEW, which helps but doesn't make it pain free.

Thanks also for your feedback, re: the Neurologist probably being right. To be honest, I think he was right too, but was expecting him to ask to see my symptoms, and wasn't sure if him not asking was usual or not.

I am planning on registering with euro-hd, but haven't done so yet. And I am with King's College Hospital, in London (which is supposedly the cutting edge for Neurological & Movement Disorders).

And I very much look forward to meeting you, too!

Take Care,
Scarlett
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Old 15-02-10, 11:57 PM   #5
just1moreperson
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Default Re: First visit to HD Clinic

Hiya hun,

Yes HD starts working on your brain years before you have "symptoms". I'm glad you got to meet Ruth anyway, will see you at the conference soon enough
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Old 16-02-10, 12:07 AM   #6
Scarlett D.
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Default Re: First visit to HD Clinic

Hiya Jaq, thank you so much for your post! You have given some great advice, and I will definitely try that, writing down when I have my symptoms and also writing down some questions to ask for next time I go to the clinic.

BTW, I am sorry, I meant to say this in my other post on here - but due to a typo I somehow managed to miss out saying that the reason the Neuro was in a hurry was because he was trying to get me to the psych before the psych went home! Doh.

I have just edited that post, to the sentence I had missed out!

Take Care,
Scarlett
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Old 16-02-10, 12:09 AM   #7
Scarlett D.
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Default Re: First visit to HD Clinic

Quote:
Originally Posted by just1moreperson View Post
Hiya hun,

Yes HD starts working on your brain years before you have "symptoms". I'm glad you got to meet Ruth anyway, will see you at the conference soon enough
Thanks for that Matt, and I look forward to seeing you!

Scarlett
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Old 16-02-10, 09:42 AM   #8
colettew
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Default Re: First visit to HD Clinic

Hi Scarlett
Im sorry to hear your appointment was not as helpful as you had hoped. It is not helpful to feel rushed. I know at our first appointment I had a notebook full of questions. I can relate to your reaction to seeing it in 'black and white' i.e in a letter. For me, seeing that first letter was very hard. Until then I could tell myself it was my imagination or not too bad. After that I had to start to accept it was HD. This happened after every appointment my husband had. He had them from the speech therapist and the physio. Everytime reading stuff was hard and made me acknowledge that this was all real. It is really tough but is getting easier.
In terms of HD affecting the brain before symptoms - yes it seems to - but the reasearch also tells us how much the body and brain can cope with before we show symptoms. This makes me believe that people can continue to live well despite having some symptoms.
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.

Enjoy the youth conference - Im sure you will get to meet some really great people and have a lovely time.

Sadly I am too old - and busy looking after my two troublesome youths at home!

x
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Old 16-02-10, 02:11 PM   #9
just1moreperson
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Default Re: First visit to HD Clinic

Old is never a word I would associate with you Colly

Debbie do you know what your CAG is?
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Old 16-02-10, 06:20 PM   #10
jillb
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Default Re: First visit to HD Clinic

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
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