Hello everyone,

I'm getting tested soon for Huntington's. My grandfather had symptoms starting around 78. My mom is 51 and doesn't have symptoms. What age should I expect to have symptoms? I've read articles that it's solely repented on the cag count (44) and others saying you get it approximately the same age as your parent/family. What's the truth?

Neither! The CAG count is the single most important variable and yet the age of onset for a particular count can vary by 20 years or more. There are modifying genetic factors so even if you have your affected parent's CAG count you also have other genes inherited from the other parent which might make onset earlier or later. Environmental factors come into play; we know this because identical twins often have different ages of onset. Family studies have tended to show a closer correlation between siblings than between parent and child but siblings often have different ages of onset. It's just not predictable on an individual basis.

I've often wondered about this, too. In Ray's family, though, they all started symptoms and eventually died at basically the same time . . . 30ish onset through mid-40s. Ray's CAG was 53, but I don't know what his mom's or siblings CAG counts were.

Mae I'm cag 36. Probably would not have lived to see symptoms. I would assume the environmental factors Marsha mentioned play a role in mine. I had a head injury 6 mos prior to onset. I can't imagine anything higher. Life is pretty gloomy sometime at 36.
Chin Up!
Mike

My husband and his brother both have a CAG count of 42, same as their mother. She was showing signs when I met my husband. She was 40. My BIL was about 35 when we noticed signs. He is now 42 and has severe signs. My husband is 39 and has no signs at this time. Hopefully, that continues. It used to make me wonder if they messed up his testing. At least until we went thru IVF PGD and the doctors there ran the test again to confirm is CAG count.

My husband's father probably started having behavioral and cognitive issues around 39. (unknown CAG). He died at 61. My husband at 41 (cag 42) is considered pre-motor. My SIL's are identical twins with a cag of 43. They are early intermediate stage with symptoms manifesting differently for both. My husband's uncle is late stage at 68.

Klivin what is pre-motor, curious.
Mike

Mikee:

I am too. My best guess is that is has to do with the fact that Ken has depression and irritabilty associated with HD that he is treated for but does not currently meet threshold for any motor symptoms. He does have some twitching in his toes that he has had for a while...other than that he is well. He received SSD in 2010, however, has pursued a goal of getting his drug and alcohol counseling license and he just began working at a full time job--he is particpating in ticket to work through SSA which will give him 9 month to "try on" the job, recieve his benefits and his pay. We have agreed that if it becomes too much for him he will stop, but at this point he is enjoying it and appears to be doing well. My two sister in laws have different issues, one cannot work, her cognitive issues are much more severe and she is on SSD, my other SIL has motor symptoms and is still working. My SIL with the motor symptoms has had several falls lately down her stairs and modifications are going to be made.

Thanks for the clarification. Makes sence. I had to go on SSD due to cognitive, motor, movement etc. Thank God I have not experienced the psychological symptoms.

Good for Ken. Glad he has the get up and go to take that step. I wish him all the best and the rest of the family. My wife is a social worker working with seriuosly mentally ill. It's stressfull but rewarding for her. Sounds like Ken is very determined. Way to go.

I don't have much twitching but tremors come and go more often than before. I'm going to change so habits and fight back.

Good Luck,
Mike

Hey Mike..

I too am a social worker...well I am just about done with my Masters degree, but have worked with the homeless and MI/CA population for about 13 years. I am glad that you are fighting back...!! Where do you guys live?

Nortwest Alabama. Alabama is making a lot of changes in their system. Very troubeling. Closing lots of state facilities. More danger for the staff on a local level.

we're in NY. Lots of changes here too...I think across the country. Are you home? working???