Hi i am new to all of this have just come on for info and if anyone knows about cag repeats , most people seem to of been given a number, my partner has only recently had blood test what came back as 42 - 46 repeats just wondered if any one else had this . not sure why its between instead of exact any clues would be appreaciated. thanks char81

My bf has HD and I am trying to learn more about it. I too was confused about the CAG repeats. I looked it up and found this

[hdbuzz.net]

I hope this helps a little


Hollie

I've never heard of a range being given. There are 2 genes, and sometimes both numbers are given, like 17 & 43. I've also heard of one person with two high genes (from 2 affected parents), but I don't think that's what you're saying.

I hope someone else has a good answer!

I believe that they are factoring in a margin for error.

Here's something else to read about CAG repeats:

[www.hdlf.org]

Thanks for the links everyone, I think your right Marsha they are just leaving a margin for error. I live in the UK and HD is not as well known or should i say we dont seem to be on the ball with raising awareness and getting information out there so am researching things myself. So any info people provide is a bonus. Thanks
Char.

Hey Char81 & hbrooks. Welcome to the forum.

Pete & Laura

Hi, I am 27 and was tested when I was 18 - cag repeat 42. I see the neurologist every year and am pre-symptomatic. I am booked to start pgd/ivf next week and it has bought up a whole lot of anxieties. I am worried about my partner being a single dad and my future children having to go through what me and my brother did - my dad had hd, he and mum divorced and he had a really hard time for over 20 years (from first showing symptoms to passing away a couple of years ago). I have been reading research and posts on this forum to try and figure out when I will start showing symptoms? But it seems that there are too many differences in the way people develop it? I only have the one experience with my dad, which was awful.

megs-

this is so hard. there are too many variables to make an accurate prediction of your future, and being on the lookout for personality changes and developing symptoms will help so much..

before you give up on any dreams, think about this: a member of my family found out they had a CAG count of 41, at the age of 65, completely and thoroughly asymptomatic. Now i know that's better than the norm, but when i talk to this person, they are SO GLAD they didn't count themselves out all of those years.

im also going through ivf/pgd, and honestly, i think the most difficult part of the process is the genetic counseling.. sometimes it feels as though all the focus is on the disease and not any on the patient, with our potential for happiness, fulfillment, and contribution.

best of luck.

Thank you noreaster. I read about someone else on this forum with a repeat of 40 (I think) that is in his 60s and still no symptoms. That would be amazing if I could follow suit! It's just so annoying! I have a really good life and don't want to miss out on anything that my future has in store for me. I am starting the ivf drugs today and the whole process should be done by the end of the month. It has made me think a lot more about hd than usual - I normally don't give it much thought day to day but I am obssessing a bit at the mo! Definitely finding it harder to sleep with all of the 'what if' thoughts going round and round. But then everyday you hear of awful stories of other people's hardships - I guess everyone has their something to deal with and we can only control the way we deal with it.

Hey kiddoes; I'm 75 CAG 40 and can still do my CAG 42 daughter's finances (she can too).
Her son (21 and untested) has accepted the responsibility of his beautiful 2-yr old daughter (one of my Great Grands). He and the baby's mother will marry in a few days; he will go away for awhile, and the DIL and Grand Dau will bring much joy into that home which is two miles up the road.
Had a wonderful life; been a lot of places like Will - still seriously considering doctoral research.
I've never grown old before, but one must be proactive.. I try to drive it anyway; I am fortunate to have a CAG of 40 - given my family's propensity for huge CAG counts and early deaths...bob