View Single Post
Old 16-12-17, 06:49 PM   #5
Approved Member
Join Date: Oct 2012
Posts: 65
Default Re: New and looking for answers :-)

Hi Sophie,

I am sorry to hear that you tested positive!! Stay strong!!

I am 26 years old and i have also tested positive and i have had symptoms for 5 years so hopefully i can answer some of your questions!!!

I have got a high CAG of 51 so i got symptoms young!!

My symptoms started when i was 21 years old. My first symptoms was twitching in my body, depression, anxiety, mood swings, insomnia.

They say it can affect you years before you actually get symptoms. It has definitely affected me from around 16 years old. I just knew i wasn't 'normal' and that i had the HD gene. I struggled with mood swings, anxiety, depression. Personally i have not had any issues with memory yet.

You could be having very early signs of the disease. When i got tested i went to see the neurologist and they told me i had already started my symptoms and they started me on medication which had made a huge difference to my life. It has stopped my mood swings and other mental symptoms. It was different for me as i do have a high CAG so i did have symptoms young but that will be different for you!!

HD definitely causes mood swings and i had them very bad!! But when you get put onto medication you will find that it really calms you down and makes you alot more relaxed.

I do have some involuntary movement and it is quite bad and it makes me drop everything as my body randomly moves all the time!! Luckily i never actually notice it myself so it doesn't bother me.

I have got very bad mental symptoms. So i am on 2 different medications to keep me stable. Everyone seems to get different symptoms and it can be very different.

I don't have any children but i do have an older sister and she is also at risk. However she does not want to be tested as she is too scared to find out. However she is 32 and she doesn't have any symptoms which is a good sign.

I got the disease from my Dad. He passed away from HD.

You are NEVER a burden!! You are loved so much by your family and they will just want to look after you!!

Let me know if you have any more questions.


Originally Posted by Shmophie View Post
Hi everyone 👋
I found out yesterday that I have HD.
Iím trying to remain positive but always felt I might have HD as have known my whole life it is in my family.
Iím not the sort of person to reach out for help but I have so many questions going through my head that I canít seem to find the answers for. Apologies in advance for the lengthy-ness.

- When I do start to develop symptoms, what will be the earliest signs? I know we are all different but for you what came first and at what age?
- Before you began to develop signs, is temper and forgetfulness a typical trait of someone with HD as have always struggled with Ďred mistí my whole life.
- What are the options for me if I want to remain independent for a long time and wish for my husband and son (currently 1 year old) to not have to be burdened with caring for me?
- I said no to a neurologist appointment I was offered as I think itís too soon. Since then Iíve now begun to wonder if my anger and forgetfulness are the first signs?

Iím trying to just get on with my life and use my time wisely but for me the few things that are really getting me down are:

- the fact that a stranger messaged me that my dad (estranged) is currently deteriorating due to HD. Had someone told me sooner I could have had IVF and my 1 year old son not been at risk.
- I already talk to my husband about my anger issues and that Iím trying to be better. Now I have HD I think itís going to be inevitable.
- I really donít want to be a burden on anyone later on in life, I really wouldnít like my husband or son to have to care for me. I just want to leave an inheritance and to make them both happy.
- Since reading around these forums, now a new one for me would be that my husband would secretly think of leaving me or wonder Ďwhat ifí and complain of me following him around the house looking for a hug (which I do already 😂). I donít want anyone to think of me like that.

I guess Iím just looking for experiences from people who have been there. Although most of my dads side of the family had HD I have never seen anyone experiencing symptoms due to being estranged from them and donít really know what to expect. Any advice I got from a counsellor is very vague ďyou might bump into thingsĒ or ďyou might have trips & slipsĒ. Donít we all?

Thanks in advance,

melissa21 is offline   Reply With Quote