Huntington's test

[diamondmoon]

I saw genetic doctor on Friday and she very concerned I could be showing signs for Huntington's. I having blood test tomorrow. I am only 40 year old and feel very scared. I am a single mum with 8 year old and 12 year old and no support near me.

[Footle]

The wait must be very hard - I hope you won't have to wait long for the result. Do you know of anyone in your family who has it ?

[diamondmoon]

Get results end of Feb. It's in my family big time my mum aunt and uncle all have passed away from it. I was 16 when my mum got diagnosed so remember it all very clearly looking after her extra

[Footle]

End of Feb , that's a hell of a long wait. I don't have anything useful to say but I'm so sorry you are having to face this possibility, especially with your children to think about.

[Sixpencenonethericher]

Hi I've been symptomatic with HD for 4 years anything I can help please ask xx

[diamondmoon]

Thanks for replying! I get results in 2 weeks. What were your early symptoms? X

[Sixpencenonethericher]

My very first symptom just before I was diagnosed as symptomatic (I'm under Cardiff ) was restless legs at night and then I had several nasty falls where I'd fall over nothing , then my balance and coordination got worse I'm 47. Now xx

[notgettingyounger]

Wishing you all the best

[Sixpencenonethericher]

Bless you it's terrifying message me any time xx

[diamondmoon]

Thank you both. I trying to keep positive until I know for sure. I had 3 falls last year so part why doctor worried. Did u have brain scan as well? How are u coping everyday to u work etc ? I sorry u been affected xx

[Sixpencenonethericher]

No I didn't have a brain scan because I knew I had the HD gene
I was working 12 hours shifts in a care home so I couldn't carry but if I had a different job I would of been able to carry on , I also had a car accident first one in 20 years so I gave up my licence that was my choice though because I was scared of something happening xx

[diamondmoon]

I work with elderly as well but it's a day centre not care home.
How was your driving affected? Was it your confidence that went or were u making mistakes?

[Sixpencenonethericher]

After no problems for 20 years one day a month before I was diagnosed I pulled out in the middle of a roundabout and wrote off a van but no one was hurt but I was scared I was going to be a bit dangerous and not mean too xx

[diamondmoon]

I very worried about my driving as making mistakes often and get beeped a lot.
Do u have any family support?

[Sixpencenonethericher]

Yeah my husband daughter and sisters are brilliant my daughters at risk so are my 2 sisters but they're all untested
What about you your a single mum is that right bless you it's so tough xx

[Sixpencenonethericher]

My grandad had it he's passed , my mum and her brother had it they are all passed xx
What falls have you had ? I was falling over my own feet xx

[diamondmoon]

I had 3 falls last year 2 in the park just walking with my kids and one outside house. I do feel my feet get heavy and careful when I walk as can stumble When I drive my back jolts foreword so very distracting. I also find speaking hard sometimes and words come out wrong or I struggle to get any out.
Yes I by myself which is why I couldn't wait and see if I am sick. My 8 year is living with his dad as he had problems at school so I see him weekends my dd is 13 and with me. All my family is 100 miles away. X

[Sixpencenonethericher]

I know what you mean about the heaviness have you got someone to go with you when you get your results xx

[Sixpencenonethericher]

I'm the same with my words by the time I get them out the conversations changed
My other uncle thought he was showing symptoms and went and got tested but he was clear so there's always hope xx

[diamondmoon]

The genetic doc is very kindly coming to my house and my dad will come up to be with me. Yes I know it can all drive u mad putting 2 and 2 together and it being nothing is huge x
How old is your daughter?

[Sixpencenonethericher]

She's 18 xx

[diamondmoon]

She is still very young is she at uni?
My fear is having my dd as my carer. I did it for my mum at 16 and it was horrid but she declined very quickly. I haven't told my dd anything yet but she knows about my mum.x

[Sixpencenonethericher]

She's doing her a levels and doing paediatric nursing at college in September , I know what you mean it's a horrible thought , my mum died of cancer at 52 so her HD wasn't quite so bad
I a
Ways wanted to tell her before she went to secondary school and as time went by I was ok and never said anything then one day she came home and asked if we'd heard of this horrific thing and was it in the family so I had to tell her she was really shaken and upset at first but after she was ok I think because I was non symptomatic it wasn't so bad , I understand totally not telling her yet xx

[diamondmoon]

Did your dd hear about it in school?
It sounds horrid way for her to find out. I never knew anything about family history until my mum got sick so was a double horrid time. That's why I am honest about my mum to my dd. Not to my son yet as he way to young. X

[Sixpencenonethericher]

Yes they were doing it in a lesson xx

[notgettingyounger]

Let's hope there is some sort of gene editing cure in the not too distant future. It's not unrealistic to hope for that before your children are affected. Good luck to you both xx