Ok 2 years ago I had my testing done came back with result of 44. One of my sons wanted to get tested and he came back with a 38. they wanted to retest both of us as his should have been higher than mine. I just got my results back and now mine are 38. I have been doing Crest e study and they wount have taken me if my results werent postive. Any one have thoughts on this

Cag from 36 to 39 is still positive, they didn't used to think that, but now that is true. My cag is 39, and i was diagnosed as early stage 10 years ago, in my mid fourties, and my dad was also a 39, and he became symptomatic 2 years after me, at age 72

PS And i guess this kind of answers a question on another thread about if results can ever be wrong, and that makes me wonder how many people have the wrong results, and don't know it, because most people have no reason to re-test, gee



Edited 1 time(s). Last edit at 07/02/2014 04:55PM by Barb.

Think I would get a third test! 38 is in the "gray" area where you can actually pass it on, but may never get the symptoms yourself...ive actually had dreams that my hubs results were wrong, but unfortunately he is symptomatic.

Gray area definitely gets symptoms now, for sure, unless they die of other causes first. This is straight from my neuro at the Michael hayden lab, and there has also been written reports that this is now true. The grey area means that a person could get the symptoms at a very old age, but younger people in the grey area have gotten symptoms in middle age, including myself and several others I've known here on the forum, that are middle age, with symptoms, with a count in the grey area.

Not everyone gets symptoms within a normal life expectancy. I know one man whose was tested at 92 with a 39 count who was asymptomatic. Some of his children and grandchildren (one of whom I knew) did get expanded repeats and symptoms; because the grandmother had died at a younger age, it had been assumed that she must have had the gene, but to everyone's surprise it was grandpa. But yes, 36-39 is now considered to be the HD gene and the idea is that if everyone in that range lived to an extreme old age, all would show symptoms.

My mother in law has a CAG of 41 and was diagnosed in her late 60s. She will be 81 this year and still lives in an independent apartment in a senior center. her brother , also CAG 41 is almost 80 and lives independently in CA.
My husband has a CAG of 42 and is on disability and has severe Chorea age 58. I realize this isnt always the "normal", but seems to be our "normal"

It varies so much. I'm CAG 36 and may have never known except for a head injury. No history complicates a diagnosis of not only HD but anything else that can be have similar symptoms. I ask to test again at Mayo and it was the same. My Neuro told he would but a lot of improvements had been made and mistakes were rare if at all.

Barb's information is actually reassuring to me since we are both in the grey area.

Mike

Ok update on my test results. Once they did 2 more tests my CAG count is 38. They called the lab that did the first one and they loked back in the records. Once they did that they found out that 2 test were done on same day. You guesses it they got them mixed up. So the person that got results of 38 realy has a 44. I bet they dont even call that person and tell them.

So yes you can get wrong results back from labs.

That is very, very disturbing.

Disturbing it is. I'm surprised they even shared that information. Perhaps you may want to consider finding out how it could happen. Just a suggestion but if it happened to you, could it have happened to others.

Mike

I brought up that count thing to my doctor ! Good for you !!!

I echo what Marsha said. I don't know if anything can or should be done about this situation, but I think HDSA ought to know about it, I would suggest e-mailing the lfollowing:

Louise Vetter, CEO lvetter@hdsa.org

George Yohrling, Director of Medical and Scientific Affairs gyohrling@hdsa.org

Will