Huntington Disease Lighthouse Families

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brothers with same cag count

Posted by casey 
brothers with same cag count
February 16, 2013 04:33PM
My brother and I have the same CAG count. He is 3 years older than I am and possibly exhibiting symptoms (massive amount of weight loss, poor memory, slightly delusional, depressed, explosive). He refuses to see a neuro, chances are he will become violent if I tried to take him to see a neuro. I think he is really scared.

My neuro says that I am not being affected by hd yet, but as of late I've been experiencing insomnia and depression. I exercise and take creatine everyday and I am in grad school. I do notice that cross word puzzles are becoming more difficult and how mentally draining focusing is when I write or read. I also notice that once something bothers me, it becomes incredibly difficult for me to calm down. With the same CAG is it possible that I will exhibit the same symptoms as him in 3 years time?
eve
Re: brothers with same cag count
February 16, 2013 06:41PM
I'm no expert, but from my limited experience of being on this site for a couple years, I'd say "no" in answer to your question. The CAG count has certainly been found to be an indicator coorelated to possible onset, but there are many stories of people with the same count who have hugely different onset times. I believe one reason is diet, exercise and who knows what else. People in the same families also can have different onsets and different progressions and seem to be differently affected.
But I would also think some good advice might be, as long as your mind is great now, why not make plans for the future in case you do start to experience onset...get everything as figured out as you can in life. You may be young and this might be difficult, but it never hurts for anyone (pHD or not) to have plans and back-up plans in place for a smoother ride in life. I'm very sorry to hear about your brother. It's got to be really painful to see him having problems. And also frustrating to have him refuse to see a doctor for possible help. I am hoping for the best for both of you.
Re: brothers with same cag count
February 16, 2013 08:43PM
Even if you were identical twins, the chances are good that age of onset would be different. There are cases of identical twins in the literature where onset was quite different and generally the lifestyles of the two people were different. Your brother is scared, stressed, and in denial. You are handling things differently. In addition there are modifying genes and your brother's DNA makeup is different from yours. It is true that CAG counts are negatively correlated with age of onset but only on the average in large data sets. On the individual level, as Eve pointed out, the ages can be decades apart.

The possible symptoms that you describe are also the same ones associated with anxiety and depression. Personally I have to work hard not to obsess over things that happen that bother me (ask Steve! ). There was a time when caregiving was particularly stressful for me and I was unable to read and follow even mysteries and I love to read. I wound up reading Signet regency romances because that was about all I could follow. So there is just no way to tell whether your symptoms are HD or anxiety and depression from worrying about your brother and about the future.

People in our community (people with the gene and caregivers alike) need to eat well, exercise their minds and bodies, and stay as healthy as possible. There are major treatments on the way. When the major trials come up, we will have to get the word out so people can volunteer if they find the drug/technology promising, we will need to lobby the FDA for an expedited decision when good results are obtained, and we will need to fight insurance companies to pay for approved treatments. I'm ready and I hope you are too!
Re: brothers with same cag count
February 21, 2013 11:56AM
I'm with you!!
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