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Old 22-08-18, 10:23 PM   #1
Uncertain
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Join Date: Aug 2018
Posts: 4
Default A Nightmare.

Hello, I am 25 years old and new to this board and would just like to share my expierience, get some advice, and frankly just vent. My grandmother had Huntingtonís, and passed away from it, my aunt was diagnosed about 10 years ago and is not doing well. I have watched two people close to me suffer with this terrible disease, and the pain that brought on was nearly unbearable. My mother has a 50 percent chance and chose not to be tested. My sister also chose not to be tested and recently brought a beautiful daughter into this world. For me, the suffering of not knowing is torture. I decided since I am going to start a family soon that I would get tested. My mother is not symptomatic at age 56, and I guess for me that brought reassurance that I would test negative and be able to move forward. During doctors visits for muscle twitches and anxiety, my doctor looked through my family history and asked if I would be interested in getting tested. No genetic counseling, just the test and the results. I agreed. My thought was ďIíll test negative and move on.Ē Well, I got the phone call and that is not the case. My CAG had 38 repeats and I now know that I may very likely develop the disease. I guess I didnít think through how much a positive result would affect me. I now know my mother carries the gene. I basically got tested for her and would NEVER tell her my result. I also now live with the knowledge that my sister could carry it, and also my niece. Iíve had anxiety disorder for quite some time with hypochondria being a key component. I now have doubts as to if my symptoms are caused by anxiety, or Huntingtonís. I regret getting tested, as I will now carry this weight the rest of my life. I havenít cried in years but the results brought me to tears. Seeing my mother now is a different expierience. She is very bubbly and happy and for me to know she carries it is tearing me up inside. I feel like I have violated her right not to know. Like I said I would never tell her, but I feel like I shouldnít know her status. I have now fallen into depression. I have lost hope. I had plans and ambitions and in my mind Iím thinking ďwhatís the point?Ē Iím getting married soon and feel terrible for my partner. The guilt is overwhelming. I get to meet with a genetic counselor in a month, which is a lifetime to wait for any type of answers. Iím sorry for the depressing post, but itís hard for me to be positive right now. Thank you for whoever reads this, and any advice would be taken to heart.
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Old 23-08-18, 03:01 PM   #2
brizbob
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Join Date: May 2018
Location: bristol
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Default Re: A Nightmare.

it is an awful disease. I'm sorry you feel bad Knowing your mum carries it but it's 50/50 whether or not it will trigger into any symptoms. Knowing is unbearable but at least you can prepare your wishes whilst your mind is still able to think about what options you may face. taking things one day at a time helps.My mum was diagnosed 8 years ago and has to be cared for 24 hours a day which we have been able to do between family members until recently when her mind has changed overnight and she has become very distressed and violent. we have struggled for the past 2 months to get professional help often waiting for a dr for 4/6 hours to prescribe a sedative to help settle her whilst we have to restrain her from attacking us.we now have to wait for crisis team to assess because they think she is also showing dementia and we had to make a difficult decision to ask for admission so they can stabilise her and help us with the violence because we promised her we wouldn't put her in care.
I had 6 months of genetic counselling before being tested but to be honest it didn't help.they just wanted me to convince them I wouldn't be negative about a positive result, so I lied just to get tested because I have children who were about to start a family and needed to know. I felt exactly how you have described feeling and have no words to convey how sad it makes me feel to know your predicament. talking does help even if it doesn't solve things. one day at a time is the only thing I can say. Sorry if I sound harsh/unhelpful that is not my intention. take care x

p.s. I am posting under my mums partners name.
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Old 24-08-18, 01:45 AM   #3
Uncertain
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Join Date: Aug 2018
Posts: 4
Default Re: A Nightmare.

Hello,

Thank you for your reply. Iím sorry to hear what youíre going through with your mom. That sounds incredibly difficult, and I couldnít imagine what that would be like. Iím not trying to get personal, but you were talking about getting tested and I was wondering what your result was? I am fortunate in that my mom is 56 and showing no symptoms. My family seems to have a late onset with my great grandmother living until 89 and my grandmother living until 74. My aunt is the exception with her symptoms starting in her early 40ís. Until my aunt was diagnosed, my grandmother was thought to be schizophrenic and was given large amounts of lithium, which in turn led to toxicity from the lithium and the inability to continue lithium treatment which led to a steep mental decline. My aunt was thought to be suffering from schizophrenia at first as well until a wise doctor decided to test for Huntingtonís. The strange thing is I donít buy into the 99% accuracy of these tests. My grandmother was previously tested and tested negative. It wasnít until my aunt was diagnosed that the issue was revisited and when she retested it was positive.
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Old 30-08-18, 10:28 PM   #4
Zlmd2017
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Join Date: Mar 2017
Posts: 19
Default Re: A Nightmare.

Hello there I was so sorry and sad too read your post yes it is a horrible disease and a really challenging time for you I know because I too tested positive for the hd gene mine was 39 do you realise by your result your actually in the grey area which is very rare this means you may never get symptoms and if you do they will be milder and at a later age. I think it's really bad you want through the test process without any genetic counselling or support. My dad also dosent know I've tested positive for the hd gene not do my brothers and sisters they don't want too know I did it for my children the eldest 23 who's expecting her first baby my second 21 who's already a parent and my youngest is 15. They all know about my result it was heart breaking too tell them but they are so strong and go on living their life you will I promise learn to accept this like I have u wish you loads of love and keep positivexx
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Old 30-08-18, 10:34 PM   #5
Zlmd2017
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Join Date: Mar 2017
Posts: 19
Default Re: A Nightmare.

Sorry about some of my spelling mistakes ****** spell check x
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