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Testing, or at risk Discuss testing for Huntingtonís disease, and living with the risk of HD

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Old 01-08-17, 01:47 PM   #1
CountryGirl
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Default Shoulder twitches

Hi all,

I hope this post doesn't sound too insensitive. I should start by saying I know that for a definitive answer I need to consult a medical professional. I'm at risk as my dad had HD and died in his 60s. Neither my brother nor I have been tested. I had counselling a while back and opted not to be tested yet.

I've got an incredibly stressful life (twins, autistic son, self employed/own business - often up working until 4 or 5am). I only mention all of this to give some context and to say that I know twitches could be tiredness/stress. I do also suffer with horrible general anxiety.

I've had twitches all over my body for last few years. My GP did point out to me that it's the twitches that stay in the same place which could be attributable to HD and that if they're moving all over they're probably not.

That reassured me a lot and over the last couple of years I've been able to pretty much set aside the worries over HD, despite being a bit twitchy. However, in the last few months I've noticed a recurrent twitch in my left shoulder, mainly later in the day when I'm tired. It's not a big movement, it's just a small twitch. But it does seem to be in the same area.

I don't have any twitches in my toes or fingers, nor my hands or feet. Occasionally I seem to get one in the centre of my torso. I guess I'm concerned because a) it's in the same place and b) my dad had a shoulder twitch.

I can't identify any other possible symptoms just yet other than difficulty organising my thoughts, or feeling overwhelmed about how to organise a big task (such as clearing out and tidying the spare room which is an absolute pit!!!). I realise though this could be attributable to my anxiety.

I'm wondering if anyone can describe the HD twitches they feel? Do they feel different from a regular body twitch? I've searched and searched online and there's nothing about it. I know I'll only get an answer if I'm tested but I'm not ready to go through that just yet. There's lots of implications to getting a positive diagnosis I'm not ready to face. However, if the shoulder twitches are more likely to be HD, I might start thinking again about getting tested because it would mean I'm symptomatic. Gulp. This is all so scary.

Can anyone help? I'd be very grateful.
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Old 01-08-17, 11:28 PM   #2
Allan
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Default Re: Shoulder twitches

.
Hi there

Being such a busy person you may not have read the responses to your first post a couple of years ago, almost the same content as this current one.

http://hdmessageboard.com/showthread.php?t=4708

I'm quite surprised that you have a GP who seems to know a bit about HD:

"My GP did point out to me that it's the twitches that stay in the same place which could be attributable to HD and that if they're moving all over they're probably not."

Interestingly, the NHS states:

"Early features include slight, uncontrollable movements of the face, and jerking, flicking or fidgety movements of the limbs and body. These move from one area of the body to another and can cause the person to lurch and stumble."

From what Iíve read and seen in various forums and facebook HD groups, motor symptoms usually begin with forms of nervous activity like fidgeting in the extremities of the body: involuntary twitches in hands, fingers, feet, toes, trunk and face.

Have a quick read through these: http://www.hdlf.org/phorum/read.php?5,83075

http://www.aboutbfs.com/forums/viewtopic.php?f=8&t=3926

http://www.med.umich.edu/md/patient/conditions-hyper.htm

http://www.healthline.com/symptom/muscle-twitch

Best wishes

.
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Old 02-08-17, 02:16 AM   #3
CountryGirl
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Default Re: Shoulder twitches

Hi Allan,

Thank you for taking the time to reply, much appreciated.

Actually the first thing I did before posting here was go back and read the last post I wrote. I can't believe it was 2 years ago now! I didn't realise I'd had replies as I didn't get any notifications through (just like I didn't just now for your reply) so at the time I'd assumed that no-one had responded. I actually feel terrible because I must have seemed so rude! I was debating with myself last night whether to reply on that thread but thought it would look rather bizarre after a gap of two years......

I read through all of the responses yesterday, and while they were extremely interesting and informative in lots of different ways, I noticed that no-one had been able to answer the question, hence why I've posted again, 2 years later. There's also a key difference this time in that my twitches appear confined to one area, something which is far more concerning.

I'm sorry I've caused offence by a) not replying last time and b) asking a similar question. I won't post again on this subject, either now or in the future and I've also learnt not to rely on notifications

I'm going to have a read through of those links you provided now. Thank you very much for pointing me in the right direction, I'm very grateful.
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Old 04-08-17, 09:12 AM   #4
LECS
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Default Re: Shoulder twitches

Quote:
Originally Posted by CountryGirl View Post
Hi Allan,

Thank you for taking the time to reply, much appreciated.

Actually the first thing I did before posting here was go back and read the last post I wrote. I can't believe it was 2 years ago now! I didn't realise I'd had replies as I didn't get any notifications through (just like I didn't just now for your reply) so at the time I'd assumed that no-one had responded. I actually feel terrible because I must have seemed so rude! I was debating with myself last night whether to reply on that thread but thought it would look rather bizarre after a gap of two years......

I read through all of the responses yesterday, and while they were extremely interesting and informative in lots of different ways, I noticed that no-one had been able to answer the question, hence why I've posted again, 2 years later. There's also a key difference this time in that my twitches appear confined to one area, something which is far more concerning.

I'm sorry I've caused offence by a) not replying last time and b) asking a similar question. I won't post again on this subject, either now or in the future and I've also learnt not to rely on notifications

I'm going to have a read through of those links you provided now. Thank you very much for pointing me in the right direction, I'm very grateful.
Hi. Perhaps Allan will answer and I shouldn't but I just felt compelled to say that you will not have caused any offence and the message board is here, so as many questions can be asked as you need to and they can be as similar as you like. The reason no-one had been able to answer your question is because no one can. No one is certain what your twitch is due to, not even your GP, no one can say for definite. Also it doesn't matter how many years you leave it between posting, when you are tested, not tested, a carer, a sufferer, it's all difficult and the message board is a way of communicating your worries and knowing there are others going through a similar experience. Please keep reading please keep posting. Looking back in hindsight as an untested person my life was slightly better because I had more choices, more cavalier in my actions I didn't consider how my behaviour would affect the other person I just got on with it, people spoke to me, now if I tell my story they run. I was too busy keeping body and soul together and looking after small children to notice anything else so I push everything to do with the 'might be' to the back of my mind. That is not easy to do I know. I think I replied to your post last time I can't remember, but do you have some support. I had a child on the austism spectrum and for me it was a huge challenge and it was really difficult to find support for my child and maybe fighting for that put my HD to the back of my mind. I was just juggling spinning plates all the time and I was tired and I was worn out. When we are tired and worn out it is hard to think straight. Allan has given you lots of information to look at, I have posted lots of messages about my symptoms but I don't suggest anyone ever reads them unless they are at least symptomatic themselves although everyone's story is different. I was also told back in the day by a medical professional when I felt I was going seriously mad that I couldn't be symptomatic because I was too aware of what was happening to me and it is unusual for a sufferer to be aware of their thoughts actions behaviour and consequences. Also I am now alone and I only have one family member who can get through to me and I listen, my eldest son and my youngest son where it still remains a secret, the rest are unable to deal with it so in hindsight do I wish I'd been less vocal, hid it more, kept it secret for longer, I don't know I thought sharing meant others would understand but it did not, everyone ran for the hills. I know my message might have muddied the waters even further for you but I think what I'm trying to say is that you have to do what you think is right for you and your loved ones and no one else really knows. I no longer message as frequently as I would like but I always happy to answer anything I get asked. Stay strong. Best wishes Lily
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Old 07-08-17, 01:49 AM   #5
CountryGirl
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Default Re: Shoulder twitches

Hi Lily,

I just wanted to say thank you so much for your comforting response. I think I'm just seeking ways to try and assess how seriously I need to take this shoulder twitch. I really don't want to go and see a doctor about it yet and I don't want to be tested.

I've suffered anxiety on and off for years and I don't think I'm emotionally robust enough to deal with the outcome if it's bad news. Less so for me, but more for my children, especially my autistic son. I know how my dad got and the huge toll it took on me and I'm terrified of putting my children through that, and also leaving that alone too soon. Also the enormous fear about how my autistic son would cope if he ended up having HD without me there to support him is just unbearable. It's obviously horrible for my daughter too but with the autism, my son is so much more vulnerable and unable to cope. Although it's scary for me, it's fear for my children that really terrifies me the most - dying early and leaving them, passing the gene onto them and also putting them through hell as I deteriorate. God, this is just so hard isn't it!

You're absolutely right about having a child on the spectrum - the last few years I've thrown all my energy into supporting him, and getting the help he needs. It's made me forget about the HD. I've gone from being quite active in the HD community when I was my dad's carer, to no longer taking any part and instead becoming immersed in the autistic and special needs community.

I think I'm probably just asking the impossible, knowing what a HD twitch actually feels like so I can judge the likelihood of this being what I'm experiencing.

I'm sorry you're having a tough time Lily and don't have much support for yourself. I really appreciate your honest and candid response. And although this may surprise you, it has helped clarify things for me. I think it's just solidified the fact in my mind that being tested isn't right for me at the moment. Unless this shoulder twitch starts to become uncontrollable or starts occurring throughout the day, I'm going to try and just push it to the back of my mind. If you ever need someone to talk to, please message me. I'm a good listener if nothing else, Sending you thanks and hugs xx
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