Huntington Disease Lighthouse Families

For HD families ... by HD families
 

Hello world - Let me introduce myself!

Posted by ptk 
ptk
Hello world - Let me introduce myself!
December 05, 2012 05:37AM
Hello everybody!

My name is Z, and I am an at-risk male from Romania, a very unknown country and a very unknown disease here. I have read a lot of topics here on this forum, and i thought here is the moment to register and say HELLO and THANKS to everybody on this forum.

My short story:

I am a 24 year old 6 feet, 205 lb "almost" healty male, with a two generation family history of HD. My grandmother and my mother had this awful disease.

My mother developed sympthoms when she was 41 ('96), starting with depression and anxiety, and five years later started the chorea and cognitive decline. She passed away in 2008, and the cause of death remained "unknown", atleast we know that it wasn't pneumonia, she was 53. I have to mention that HD in my family can only be tracked back to the female members of my mothers part. I know that this is just a coincidence, but I hope that is not!

She left on this world 3 at-risk sons, who ar now 35, 34 and and me 24 years old. My two brothers show no sympthoms, and I am very happy with this, and I know that God will keep them like this. One older one of them has a beatiful 4 years old healthy son.

In the past few months I am feeling very weird, I even had to go to a psychiatrist to calm me down and stop me from getting tested for HD. She said that everything it is just in my head, i hope that not in form of HD.

What I feel:
- Anxiety - not social, I guess that just for the situation that I am in.
- Fasciculations - all over my body!!!
- Itchy skin
- Tinglin in my fingers and toes.

I have to mention that I am a project manager and leader of a local leading automotive online based company, and this "function" is a very stressful one, atleast for me.

Maybe my sympthoms are because of the stress, maybe because of HD? Who knows?

What's you opinion?

PS. Excuse me for my English.



Edited 1 time(s). Last edit at 12/05/2012 05:39AM by ptk.
Re: Hello world - Let me introduce myself!
December 05, 2012 07:41PM
It sounds like you are symptom searching which is very common when at risk.

Welcome.
ptk
Re: Hello world - Let me introduce myself!
December 06, 2012 01:11AM
Thank you for your response, and yes, this is what my doctor said too. She said that it is very unlikely to develop sympthoms before the age of 40, because my mother started showing them when she was 41 (depression and anxiety), and the chorea came 5 years later (46), and she died at 53. She took medication for a few sympthoms, but when she died she wasn't in the last stage, she could walk, talk a litlle bit, but she couldn't swallow.

My grandmother developed symptoms when she was 40, and she died at 52, but she did not take any medication.
Re: Hello world - Let me introduce myself!
December 06, 2012 09:11AM
Welcome, Z.

There are a number of folks who had HD like symptoms and were convinced they had the gene. When they tested, they were negative. Don't forget that you also have a 50% chance of being negative.

Your English is excellent. It's hard to tell you from a native speaker.

Will
Re: Hello world - Let me introduce myself!
December 06, 2012 09:45AM
Welcome to the forum! smiling smiley

Carla
ptk
Re: Hello world - Let me introduce myself!
December 07, 2012 01:31AM
Will Wrote:
-------------------------------------------------------
> Welcome, Z.
>
> There are a number of folks who had HD like
> symptoms and were convinced they had the gene.
> When they tested, they were negative. Don't forget
> that you also have a 50% chance of being negative.
>
>
> Your English is excellent. It's hard to tell you
> from a native speaker.
>
> Will

Thank You Will,

You are a model of optimism and you are seeing the full part of the glass which is a very good thing. Maybe I just need to reorganize my thinking style, and to see myself with 50% chance to not develop HD - until the test confirms this or the other option smiling smiley.

Thank you for your compliment, I am struggling to perfectionate my english, even if I'm a native hungarian, living and working in Romania. So sometimes it is very difficult when you know three languages and the words are popping into your head always in the other language smiling smiley.

I appreciate your work and advices for this community. After I read your supplement advices I began taking Q10, fish oil capsules, calcium, magnesium + zinc, and B-vitamin complex.
ptk
Re: Hello world - Let me introduce myself!
December 07, 2012 01:35AM
carla Wrote:
-------------------------------------------------------
> Welcome to the forum! smiling smiley
>
> Carla

Hello carla, glad to meet you and thank you for welcoming me smiling smiley.



Edited 1 time(s). Last edit at 12/07/2012 01:36AM by ptk.
Sorry, only registered users may post in this forum.

Click here to login