I would say one of my best decisions when I was tested was specifying I only wanted to find out if I positive for the gene but not the specific CAG repeats. My report specified as such. The CAG was too much information for me as far as specifics.

I wanted to let people know when they are testing this is an option. You have to be specify such.

Did anyone else do this when they were tested? I only found my CAG after I was syptomatic.

Something to consider.

AR

'Carpe Diem'

In My Opinion Only, People Test in order to get informed on their status concerning HD, Otherwise, Why Bother?.
Ron C.

Andy - everyone should be able to demand as much (or as little) information as they wish.

Either at the time of testing - or afterward.

One can change one's mind.

If you had the DNA test - your physician should have the CAG repeat. You "own" all of your medical data. You have the right to demand a copy of it, as you wish!

At the COE in Boston, aka Mass General Hospital, if you test positive, they make you come back on another day if you want to know the CAG. That's their protocol. Can't say that I agree, since it's another day off work, traveling and fees for the Medical professionals, but I'm sure they have their reasons.

Wonder why Mass Gen does that... it's not like you can tell that much from a CAG count anyway. Oh well. I think if I was using that place and knew the protocol ahead of time I would make sure they told me all of it. It's not like 40 is great and 44 is devastating at that point.It's like JL says you own the information... not them.

I think we are learning more about the corellations of CAG to other things in HD and this is new information which few see the global unless they have my family type history and knowledge of HD. It is obvious even now that paternal transmission of CAGs results in the same or worse HD, typified by Barb getting HD before her father and most JHD comes from the father. If I were a man with HD positive,
I would use every technique in science to avoid passing on JHD.
Maternal tranmission results in the same or better CAGs, so a lot depends on whether your CAG is around 40 or 50. Just about every one else my age with my CAG is in LTC or dead and I'm not. how come. My sisters CAG was 28, did that have anything to do with dying of cancer.
Long ago I think the PHDs just passed as normal until the symptoms emerged. Huntington himself described it as a family disease and HD is at the front of the work on the human genome.
So I disagree entirely that you don't need to know your CAG, and I would be very angry if anyone thought it was too much knowledge for the patient
Dusty

I was just stating that you can't make firm predictions from your CAG count... some counts may be a bit more concerning than others. But either way it's no reason to withhold the count or put off giving it out. The counseling should explain all the stuff so you can deal with the news reasonably. Probably the gray area ones may be the toughest to process because the intention was to be informed and you still are not. I think if someone crumbles when you give someone the news... you might make an individual call to hold off feeding information... but as a flat out protocol I don't get it. It's just being cautious I would assume and err on the side of doing the least harm.

Merry Christmas Eric
My CAG's came in a letter from the geneticist to the family doctor, the neurologist.I was allowed to determine who would get to see the CAGs. The oral report from the geneticst said in the high 40's but that is no surprise to you with a HD probable. and I said xwx!@# you drxx who said I was OC and making it up.
The geneticist
told me no copies were kept of the CAGs probably because they have the family lines there in your chart.
The grey areas up here they just say you don't have HHD and close the chart which makes fewer people with HD now who might get it in the future but are cut off from thinking about supplements et yet they are the people most likely to benefit from supplements etc.
Dusty

Merry Christmas Dusty!

i never found out my cag i know enough gene positive

Wonder if the CAG is like 49?

Whose? SoftSmileAnne's or Dusty's?

Andy and Anne: If you don't mind my asking - why would you want to know whether or not you tested positive - and not want to know what your CAG repeat is?

I guess I'm not "getting" that.......... jl

That's like finding out your pregnant, but not finding out how far along you are!!! LOL LOL LOL

That is a funny analogy Barb -

For me my Dad was late on-set - lower CAGS, he wasn't symptomatic until 55. I didn't realize that getting from your is typically earlier onset.

But in general testing was ok, for planing purposes. We were just about to have kids. We decided to adopt. So I am glad I tested, knowing you will get a disease is one thing but knowing the age onset is too much information for me.

AR

'Carpe Diem'

Well, that's the thing, Andy. Knowing your CAG repeat does NOT tell you your age-of-onset!

I have a CAG repeat of 43 - and at age 60, I'm barely symptomatic. I've talked to many people with the same CAG repeat who have had wildly different ages-of-onset.

There's a correlation - but it's obviously a LOOSE correlation.

jl

I like your analogy, Barb - but it only goes so far. With pregnancy, you know your due date within a couple of months (at most).

With HD - the variance can be a matter of years - even a couple of decades.



jl

lol

AR,
My sister Joanie was an avid eugenicists. I heard from her over my childhood and teen years that I had dirty seeds and should not reproduce.We first considered adoption after our genetics consult with Dr. Barbeau. One day there was a child in the newspaper column called Todays Child who had a parent with HD. I thought we would be perfect parents for the boy but in order to adopt him I would not mention HD as a factor. As soon as my mother died HD was hidden from everyone. Medically my mother had a heart attack and died.(after chocking on toast in a LTC)
Ross and I were not able to adopt thus we had our own kids with a prayer for a test during our lifetimes which came true.
Dusty

I didn't know this was an option so good on you AR for bringing it to our attention! Some people do place too much emphasis on CAG counts, but we are all desperate for knowledge about HD and how it is likely to affect us and our families, so in the absence of more information, we will cling to whatever information we can gather, including what CAG trends might or might not mean for us. This information can calm some people and scare the hell out of others, so the option to not know just as personal a decision as knowing your HD status in the first place. Me personally I would want to know, but I can see the benefits of both sides here. Knowing you can choose this option is giving us more power to choose what is right for us. So thank you AR for letting us know our options and giving us back some power: the power to choose!