Julie!

Yes, sometimes you have to pay to have the test done.

Depending on your insurance coverage. Or lack thereof.

Sometimes people choose to pay, themselves. For privacy reasons. There are strict laws now about sharing of medical information.

With your employer, for instance.

But a lot of people still don't trust them.

jl

How would you judge the quality of your care, Julie?

Thanks for the info.We have the privacy issue on all our medical reports here.
The dr told my partner when his reults are in(that seems to take a life time to happen)that they do not open the letter,they wait and open it when he is there,so they will find out his result at the same time.
I asked her does she take a peek at the results,because i would if I was in her shoes.She said No I wait.

This testing procedure is all about waiting.Cant belive how long it takes(5 months).

It only took 4 weeks for me. Even that was agony!

They did the same thing. "We haven't looked" Yeah, right!

Nevertheless, they've been VERY careful about the privacy issue!

They absolutely won't share the results of my tests without a written release from me. And that release can even specify exactly what information can be shared (and to whom) - but it has to be spelled out in writing!

4 weeks is quick.Its takes us that long to get in to see a dr.He made the appoinment today to have the blood taken & he cant get in till 17th July,then it will take 6-8 weeks for the results to come back.That is a long time when its on your mind all the time.
The blood was tested at Sydney now it gets sent to Melbourne,but the testing has changed since his sister went in 1999.

Wow Julie, i'm from Canada. Took 3 weeks to get my results after the blood was drawn, but i think it is because i am in the vancouver area, and there is a huge genetic testing centre here. Also, my results were not private, the neurologist already had my results in his file, and he read the results to me. Sorry you have to wait so long for the results.

Barb,
what is procedure with testing there.
We have to go to see the dr & councellor,then see a neurologist,then to see a psychologist,then have blood drawn and from then its the 6-8 week wait for the results.

Similar protocal here in Canada and in the US

The same process for me and my family in Ontario. I flunked the psychiatric intake because there was already a lot of stress. The shrink who did it actually had more knowledge and compassion about HD than anyone else I ever met so far except for Dr. Barbeau in Mtl. Unfortunately he has retired.
My son was pretty hysterical about the sudden possibility of HD, and as he was in a university he found all the hopeless type books. He was angry at me for the HD family secret too. He does not have HD. I had to laugh though because he was in the waiting room with an appointment with the geneticist right after mine, and they were very careful to put Ross and me out the back door.
My daughter who has the kids sees her own shrink. She was allowed to bypass the genetics support, have the blood test and get the results.

My youngest son saw my neuro and they ruled out that his problems could possibly be HD. He had his own neuro until he was 18 and now has no services. His neuro was the one that I developed such excellent parakenisis for.

My neuro prefers to take a year before diagnosing HD. I thought it was very funny that his resident was named Dr.Huntington and had to look it up. So I had a HD probable for a year before the blood test.When I got the HD probable, most people went into denial, especially my husband. so when I said I had HD probable they would all say well the doc might be wrong. The neuro was relieved to have his diagnosis confirmed, and everyone else in my life said Oh well it's not really new news for you.
So if you ever want to wonder why PHDs get to screaming and yelling...
Dusty

Same here. After the genetic counseling & the psychologist visit - they wanted me to take a couple weeks to think further about it, before had the blood drawn. I said, "I've been thinking about if for years - I want it drawn, now!" So it was.

One thing they suggested, I was glad to have listened to was this bit of advice. "We noticed that you came in alone - and you say that you live alone. We strongly advise that you have someone drive you when you come in for the results". I did. And it was a good thing, since my knees were too shaky to drive, after receiving a positive result!

I agree.you think about testing for a long time and when you want to go for the testing it just seems to drag on.

Can I ask if you think its true that when passed on by the father,it starts at an earlier age with higher CAG repeats?
Its just that our dr was certain my partner would have a repeat of 31 or 44.

Sometimes I wonder do I know more about HD than she does!

You could, Julie! My experience was that medical professionals had little or no knowledge.

I think there have been general trends that would suggest that if passed on by the father - it is more likely to have higher CAG counts, than if it was passed on by the mother.

There also seems to be a general trend that higher CAG counts result in earlier onset.

But my family definitely didn't prove that out.

My grandfather passed it on to his children. Out of 8 children, 4 inherited HD. That certainly followed along with the 50% probability.

But from there on - it wasn't consistant, at all.

Grandpa died of HD in his mid-50s. So did one of his daughters. One of his sons died of HD before he was 40. Another son died of suicide in his mid-50s. MY father died of suicide at 69!

Unfortunately, the lack of a DNA test does not allow us to know what the CAG count of these 4 were!

My father had 4 children. One sister died in an earthquake. 2 have been tested. My brother has a CAG of 17. I have a CAG of 43. My other sister hasn't tested - but she obviously has HD!

Hang in there on waiting for results - I know it's hard!

Julie,
In my husband's family this is not true. My husbands father had two sisters. Those three sibs presented symptoms in early to mid forties. The two sisters died in nursing homes mid and late 50's from HD. His dad died in car accident at age 49. But in my opinion was early late stage.

Anyway so far in the next generation all three branches of the family have presented in late late twenties. Each sister had children that presented early than my husband, mid twenties opposed to 30 yrs.

It's possible that all three of my father in laws generation showed signs earlier than we know since these days we know more to look for. In my husband's generation one as early as 22, died in bike accident and three symptomatic. It think that the CAG plays a part but environment and health plays a bigger part.

I would just like to thank you all for your comments and honesty.

The problem with living in Sydney is that there are not many people with or who knows about HD.(including the drs).So I thankyou for all your support.
Julie.

There are a lot of doctors in the US who don't know anything about it either, Julie. That's why so many of us exchange information on sites like this.

Hi Julie

My name is Dave and I also live in Sydney, Australia. I am 50 years old married with 4 kids and tested positive in late 2002 (CAG 43). I inherited my gene from my mom who sadly lost her fight with HD 2 years ago at 69 her CAG was 42.
The small positive in our family is HD tends to be later onset compared to most, mom was diagnosed in her mid 40?s and I have no symptoms yet and I am still working. I don?t have many family members to compare with as my only 2 brothers both tested negative and my mom?s family have all passed.
I have been a long time reader of hdac and the lighthouse for a few years and found them and the people in them to be both informative and inspirational.

I am also sorry it took me so long to answer your post but I had to register with Steve first before I could get access.(then I forgot my first log in and had to get him to reset it ?.did that constitute a symptom ?).

Dave

Thanks Dave

Did you have your children before your mum was diagnosed?

We are just going through the process of the testing.Im gathering you went to Westmead hospital for your testing?

There is now a genetic testing at Penrith(Nepean Hospital)now so thats who we are dealing with.

Hi Julie
Yes I did go through Westmead when I did my testing and they were great as I am sure the Nepean people will be too. My wife and eldest son are RN?s at Nepean, wife in the cardiac dept and son in the male surgical ward, but I never knew there was testing there?

We had 2 kids before my mom was diagnosed and decided to have the others like we had always planned. Having kids like testing is a very personal decision and brings out some very heated and emotional debates when mentioned in these rooms. We have always been honest and open with the kids about HD and they have grown up with my mom a big part of their lives. We were her primary carers for many year and the kids took it very hard when she past.

The testing is a very stressful time but you have to try and keep positive until the results are back.
I am happy to give you my email address if you want.

Take care
Dave

Thanks for that Dave.

Im not sure how long the testing has been at Penrith,but they are only there monday,Tuesday & Wednesday,but just like Westmead there is a waiting time.

We did go & speak to Fiona at Westmead who told us about Penrith which is closer to us,as we are past 10mins past Winsdor.

As for the kids,we have one,but we did know about HD when we had her,but all we knew was the name not much about it.My partner hasnt seen his father for 8 years as he is in South Australia.I have read the posts about having children while knowing about HD & yes the discussions
are heated,but as you say a personal choice.Yes we woild like more children,but we are going to wait for the results(if we are brave enough to find out the results,I think Im more scared than my partner)
& we will go from there.

I know this disease is horribly,but as I have said to the drs what if my daughter does carry the gene for HD what will treatment or better still cure be in 30-40 years??

Julie, there isn't anything you can do about that. The research is ongoing and it's showing lots of promise. But it's not ready just yet.

Have some faith that the people in the know can figure this out for the children and all the victims.

All we can do at this point is keep in shape, keep the spirits up, and try and be optomistic. There are some proactive things we can do like take suppliments.

And we can share information and tips with one another.

We have to worry about what we have and not what we do not have. Enjoy the day and keep on going. If you let this get you down and scare you it is hard to progress and keep going.

If you don't know the results from the father, you don't really know if you have any problem at all. If he has it, yes, there's a problem. But the otherside may be true and he doesn't. Then you don't have to worry about this dragon.

Test for the children. You need to know even if the news is very bad. It's better than lying to yourself or hiding from the truth. That is a path that leads only to frustration and suffering.