My head thinks I am sick... but I think I am not :)

[rvtrvt]

Hey All,

let me start off that I feel some anxiety going on this is something that came and went the last +- 10 years and started after my father past away, I am 38...

Feels horrible but after I set my mind away, do so something I never done, it will usually go away (long herm, takes soem months, change of job etc...).. Now it's there again bit with a little twist :rolleyes:

Last year Feb 2008 I came to hear that on my fathers family the huntington decease was active (long story, but we didn't had any content with my fathers site of the fam.). Some of my fathers brothers already past away and a age of 50, and even some sons of my fathers brothers already have signs of the decease and I know at least one already past away. All at a young age and even younger to me.

The bad news is that my father was never tested (he might have been in secret though, but never told us out of shame?... we would never know anymore) so we (I have two sisters and two brothers) would never know if we would get the decease or not.

The good news is that Me and my family don't see any sign, and my father got old to a age of 64, and we have never noticed anything... Also my brothers and sisters are perfectly fine and two oft them ar 2 and 6 years older then me, but time will tell....

About myself.. I feel good, healty, works as a freelance engineer, make a good amouth of money have a great wife and a wonderfull house, great life to...

About my problem:
I feel a good share of anxiety going on un till the point that every little twitch and shake reminds me of huntington, and my 'brain' thinks I have it, but I don't agree... if you know what I mean. The anxiety shows itself by a lesser amouth if concentration on the things I do and I get this 'shock (reminder off...)' with every twitch or thing my body does 'wrong'. Even if my hands start to shake a little bit after work, or when a muscle in my leg starts to twitch.. I feel the anxiety rushing up my body, which makes things more worse then better... As a result loss of concentration, which affects my work.. I need to work later to finish off... make me feel more tired, makes me sleep bad, make me concentrate bad..... yada yada yada...

It's like a mental circle I guess :(

So now I need to break this damn circle and start feeling happy again, strong and full with great ideas what I used to have!! By doing this I will feel better concentrated, more happy, less shaky, less feeling of the twitches etc. etc.

For me personally talking always helps... I just cannot keep on talking with my wife about this, a third person helps better I guess... My wife knows about this of-course.

PS: testing for the huntington decease is not really a option because there is no cure... DAMN!!!!

thanks for listening,
RVT

[paula]

Hi Rvtrvt & welcome to our community

I have looked on the web & copied some diagnosis symptoms down for you to read.

Diagnosis
Further information: Genetic testing

A physical and/or psychological examination can determine whether initial symptoms are evident. Abnormal movements are often the symptoms that cause initial impetus to seek medical consultation and lead to diagnosis; however, the disease may begin with cognitive or psychiatric symptoms, which are not always recognized except in hindsight, or if they develop further. Pre-symptomatic testing is possible using a blood test which counts the numbers of CAG repeats in each of the HTT alleles,[61] although a positive result is not considered a diagnosis, since it may be obtained decades before onset of symptoms. A negative blood test means that the individual does not carry the expanded copy of the gene. A full pathological diagnosis can only be established by a neurological examination's findings and/or demonstration of cell loss in the areas affected by HD, supported by a cranial CT or MRI scan findings.[62]

A pre-symptomatic test is a life-changing event and a very personal decision. The personal ramifications to an at-risk individual and lack of cure for the disease necessitate several counseling sessions to ensure that they are prepared for either result before it is given.[63] In England, Scotland, Northern Ireland, Australia, Canada and New Zealand, unless a person under eighteen years of age is considered to be Gillick competent, testing is not considered ethical - unless they show significant symptoms, or are sexually active.[64] Many organizations and lay groups strongly endorse these restrictions in their testing protocol.
Prognosis

The age of onset decreases, and the rate of progression of symptoms increase, with the number of CAG repeats. Individuals with greater than approximately 60 CAG repeats often develop juvenile Huntington's disease.[74][75] There is a variation in age of onset for any given CAG repeat length, particularly within the intermediate range (40–50 CAGs). For example, a repeat length of 40 CAGs leads to an onset ranging from 40 to 70 years of age in one study. This variation means that, although algorithms have been proposed for predicting the age of onset, in practice, it cannot be predicted confidently.[76][77]

The life expectancy is around 15 to 20 years following the onset of characteristic manifestations of the disorder.[78] Mortality is not caused by Huntington’s disease directly, but by associated complications; these include pneumonia (which causes one third of fatalities), heart failure (although heart disease, cerebrovascular disease and atherosclerosis show no increase), choking, malnutrition and physical injury.[79] Suicide is an associated risk, with increased suicide rates of up to 7.3 percent, and attempted suicides of up to 27 percent.[80][81][2]

[edit] Epidemiology

As HD is autosomal dominant, and does not usually affect reproduction, areas of increased prevalence occur according to historical migration of carriers, some of which can be traced back thousands of years using genetic haplotypes.[82] Since the discovery of a genetic test that can also be used pre-symptomatically, estimates of the incidence of the disorder are likely to increase. Without the test, only individuals displaying physical symptoms or neurologically examined cases were diagnosed, excluding any who died of other causes before symptoms or diagnosis occurred. These cases can now be included in statistics as the test becomes more widely available and estimates have shown the incidence of HD could be two to three times higher when these results are included.[83]

The prevalence varies greatly according to geographical location, both by ethnicity and local migration; The highest occurrence is in peoples of Western Europe descent, averaging between 3 to 7 per 100,000 people, but is relatively lower in the rest of the world, e.g. 1 per 1,000,000 of Asian and African descent.[4] Some localised areas have a much higher prevalence than their geographical average, for example the isolated populations of the Lake Maracaibo region of Venezuela (where the marker for the gene was discovered), have an extremely high prevalence of up to 700 per 100,000,[84] leading to the conclusion that one of their initial founders must have been a carrier of the gene. This is known as the local founder effect.[7]

I hope this will help you?

[rvtrvt]

Hey Paula,

yes I knew that already... or mostly.
Personally I don't want to know right know and it's even hard to test the CAG repeats because they cannot do the reliable if you don't have the symtoms.

However, the posbility of having Huntington.. although currently for my very small but greater then 7:100.000 makes me anxious.

i need to get rid of the anxiety because that makes me nervouse, feeling of stress and bad concentration. My head easely starts to spin around all teh thinks that will go wrong, rather then the posibility that nothing is wrong even. Specially because non of my bro's and sisters... and even my father at the age of 64 had any sympthoms.
So my chance of having HD is far less then 25%, and get's smaller and smaller overtime... But I would need to wait 20 years to be sure :s

thanks for the anser though,

Still how do I get this out of my head and life a happy life without worring to much?!?!?!

RVT

[Proverbs31:28]

It sounds like you are aware of and familiar with the symptoms of anxiety. I have read many times that many anxiety sufferers focus on physical illnesses- real or imagined. Clearly, you are justified in fearing that you have this disease. Is it possible to get tested or would that increase your anxiety? I know for some people, knowing for sure alleviates anxiety but for others (like me) it is easier to live in oblivion.

[paula]

What I would suggest is making an appointment at your doctors & letting him now of your Anxious state!

I too suffer with Anxiety, along with other illnesses, so I understand where your coming from!

There is many of different kinds of medication that would help with your situation, but only your doctor could prescribe them!

Please go and see your doctor. None of us on this site are qualified to diagnose your symptoms, only a professional can do that! Even though a considerable amount of us may suffer from Anxiety, we can only advise which is still not helping you much regarding the medication that you need? You really need to see your doctor to diagnose you and prescribe the right medication to help you!

[rvtrvt]

@proverb: The problem of bing tested with HD is that if the test shows positive you know your feature, and it's not a bright one. So I prefer to life without knowing, but get rid of the anxiety.

@Paula, you are properly right....

rvt

[ASchwartz]

Hi Rvtrvt,

I understand the dilemma you are in with regard to feeling all of this anxiety and worry that you might have HD and the wish to not be diagnosed because there is nothing you could do about it. However, I just want to point ou there are some other things for you to consider:

1. A full examination could reveal that you do not have it and you be free of your worries and anxieties. How great would that be?

2. Yes, if it turns out that you have it you would feel awful but, at least, you would be able to plan your future, including how to enjoy your life while you are free of symptoms. When my children were babies their pediatrician was diagnosed with a malignant brain turmor. He quit his practice and he and his wife travelled and saw the whole world before he died.

3. What is incurable today can change very rapidly because of all of the ongoing research. You can be connected to that research and ready for the newest treatments that could cure you and save your life, possibilities thay you could miss by not knowing.

On a personal note, I know that I want to know. It just gives me a greater sense of control over my life, even if I were diagnosed with something terminal and incurable. By knowing I can do what I want to do and not feel like I am wasting my remaining time.

Anyway, just some food for thought. I respect your decision but I hope you will think about this.

Allan :)

[Proverbs31:28]

@proverb: The problem of bing tested with HD is that if the test shows positive you know your feature, and it's not a bright one. So I prefer to life without knowing, but get rid of the anxiety.



rvt

I am the same way, so I understand. Having read Allan's reply, however, he makes some good points which I had not considered.

[nancyannee]

everybody has good points for finding out and so do those who say "ignorance is bliss"

for what my opinion is worth, I would want to know. As hard as it would be, it would be better than wondering and the worrying. I would get a definite answer and then deal with it instead of not knowing.

good luck and what ever choice you make is going to be okay.

[Jetliner]

Hi RVT,

Sorry for coming so late to this but, just happened upon it.

Though I do not have, nor is there any history of HD in my family, because of a very dear friend who does have it, I have learned more about it than I could have imagined. Even started a website to raise awareness and $ for research to find a cure/treatment: http://www.musicforhuntingtons.com

In the links section, I've tried to gather together all the stuff I've found in my, "research" into one area that will be easily accessible, though I still need to organize it better. :p If there's something you need/want to know about Huntington's, it's probably in there somewhere! ;)

And I completely understand the incredible dilemma of the question over whether or not to test. Well, not from a firsthand point of view of course but, as close as I can. It's an intensely personal decision and one that can't be taken lightly. It's an ugly disease - one of the worst I've ever encountered. But you know, research is showing tremendous promise and there is a real consensus that a significant breakthrough (if not an outright cure) will come within the next ten years or less!

Anyway, just wanted to say that and that, if you ever want to talk about it... well, you know. There's a great forum here too if you want more input on testing or just to bounce your thoughts off others: http://www.hdac.org/phorum/list.php?5

Take care,

John

[JulianP]

deleted....

[lacyjay87]

I just wanted to say that when it comes to your mind thinking your sick, but you really don’t I immediately think of Hypochondria (an excessive, usually long-term preoccupation with health and bodily sensations, accompanied by a deluded conviction of having a serious disease without objective evidence) I think if you just go get tested (even if there is no cure) it will help you with your anxiety.
~Lacy~

[JulianP]

deleted....

[ASchwartz]

Hi Everybody,

All of you have good points to make and nobody is incorrect or wrong in their opinion.

It is a terrible thing to live with the anxiety that you could have or might have a genetic disease. Again, speaking for myself, I would rather know because that would focus things for me and, I could plan my future. I would also look for every new treatment and every new cure under the sun. I would also make a lot of decisions about not delaying gratifications and start living my dreams, now.

Allan:)

[Jetliner]

Just wanted to add another two cents and, a little understanding maybe. The decision to test for HD is unlike most because of the implications of a positive result. I think, "13" from HouseMD said it best when she said, "You could get hit by a bus and die next week! Only you don't have to know it today!"

Sometimes, having a glimpse into the future can be a good thing. My father had a year after his diagnosis of cancer to say and do the things that he wanted before he died. But with Huntington's, sometimes it's actually better not to know. Imagine living with the knowledge that, not only are you going to die MUCH younger than you may have thought but also that, you would lose the ability to reason, to move, to relate to others, even to speak. Your body would take on a life of it's own and leave you nearly powerless to control it; your mind itself would become a jumbled mess of disconnected thinking, that you can't control either. And most of all, the idea that this would greatly affect the lives of those around you who love you and care about you so much. HD causes significant disturbances (to say the least!) within family and friend, "structures." It's one thing to have to go through it but quite another to know years in advance that it's going to happen and be totally unable to prevent it, which is also why suicide rates for those with an HD diagnosis are well above the norm. I know of people personally who would rather isolate themselves rather than put their loved ones through the torture of seeing them deteriorate like that; to treat them horribly even though it is not they who are doing it but, the disease. Imagine wanting to say, "I love you so much" but instead your mouth says, "Get out, I hate you!"

It's a highly personal decision, which is why there's counseling available for those who are considering being tested and I would urge anyone who is in this position to seek out that counseling before making any decision. There's an awful lot to consider.

Guess that was more like 5 cents. :p