Guest guest Posted August 6, 2002 Report Share Posted August 6, 2002 Ivan, Have you ever determined if you were a mosaic 47XXY? Some people who are diagnosed as XXY are actually mosaic. Which means that only a portion of their genes are XXY while the remainder is normal. This is a rather common thing to happen according to the studies I have read. This can be a factor in why you have fewer of the symptoms or that they are milder. I guess the morale of the story is that these conditions vary wildly from person to person so it is difficult to find a common set of symptoms for all of us. Best of luck and congratulations on the dedication you have shown to achieve your goals. Regards, Connery Email: jonathan@... <mailto:jonathan@...> Web: http://www.jonathanconnery.com <http://www.jonathanconnery.com/> " We must always strive to do the things we think we cannot do. " -Eleanor Roosevelt 47XXY Symptoms Kaitain4 There are a number of us that are 47XXY that exhibit very few of the classic symptoms associated with this Karyotype. I for one, exhibit very few of the classic symptoms. Yes, I am 47XXY and my sperm count in my ejaculate is zero; however, my testicles do have the cells to produce sperm heads. The breast tissue that I had to have removed grew because of the testosterone that I used for the six months before my DX. There are a few of us, like myself that do not deal with being obese, in fact, many would say that I am underweight for my height. For some of us, our testicles produce sufficient testosterone for our needs. Myself, I use no drugs of any kind, not even over the counter drugs and the last time that I have taken so much as an aspirin was in November of 1984(only took 4 for acute sciatica) and those were the first aspirin that I had taken since 1981. As a youngster, I had rheumatic fever three times and the only medication was prescription aspirin and sulfa pills, so I have taken plenty of aspirin in my life. At the age of 59, I am in the best physical, mental and spiritual condition than at any other time in my life, and I am not impotent. I am physically stronger now than when I was DXed at the age of 30. I was DXed because my wife and I wanted children and nothing was happening. I have had a full beard for 21 years that I have to trim about once a month to keep it at the length I prefer. Puberty started for me around age 11 or 12, my voice changed, and pubic hair grew in the male pattern, and I was quite hairy from my pubic area down. I didn't have much hair above my pubic area until I started on nutritional program at the age of 39. I was literally born(born at home) and raised on a dairy farm, which required me to do strenuous physical labor at an early age. At the age of 13, I literally became my folks hired man and did the work of a man everyday. School and learning have always been easy for me, and I graduated from high school at the age of 17 and was 5th in a class of 95. I went on to college and graduated with a B.S. in Civil Engineering and my Professional Engineer in Training certification. As soon as I qualified to take the Professional Engineering test, I took it and have been a Registered Professional Engineer since 1972. I realize this sounds like bragging, but wanted to share with the group that all of us that are 47XXY or some other variation of Klinefelter Syndrome, do not always fit the classic symptoms for the syndrome. And, as you can see, am not shy. HAVE A GREAT DAY! Ivan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2002 Report Share Posted August 6, 2002 Ivan, Thanks so much for your great posting. I'm going to discuss this with my Endo and see if he will run some tests. I would just like to know for my own peace of mind. Thanks! K4 > Kaitain4 > > There are a number of us that are 47XXY that exhibit very few of the > classic symptoms associated with this Karyotype. I for one, exhibit > very few of the classic symptoms. Yes, I am 47XXY and my sperm count > in my ejaculate is zero; however, my testicles do have the cells to > produce sperm heads. The breast tissue that I had to have removed > grew because of the testosterone that I used for the six months > before my DX. There are a few of us, like myself that do not deal > with being obese, in fact, many would say that I am underweight for > my height. For some of us, our testicles produce sufficient > testosterone for our needs. > > Myself, I use no drugs of any kind, not even over the counter drugs > and the last time that I have taken so much as an aspirin was in > November of 1984(only took 4 for acute sciatica) and those were the > first aspirin that I had taken since 1981. As a youngster, I had > rheumatic fever three times and the only medication was prescription > aspirin and sulfa pills, so I have taken plenty of aspirin in my > life. At the age of 59, I am in the best physical, mental and > spiritual condition than at any other time in my life, and I am not > impotent. I am physically stronger now than when I was DXed at the > age of 30. I was DXed because my wife and I wanted children and > nothing was happening. > > I have had a full beard for 21 years that I have to trim about once a > month to keep it at the length I prefer. Puberty started for me > around age 11 or 12, my voice changed, and pubic hair grew in the > male pattern, and I was quite hairy from my pubic area down. I > didn't have much hair above my pubic area until I started on > nutritional program at the age of 39. I was literally born(born at > home) and raised on a dairy farm, which required me to do strenuous > physical labor at an early age. At the age of 13, I literally became > my folks hired man and did the work of a man everyday. > > School and learning have always been easy for me, and I graduated > from high school at the age of 17 and was 5th in a class of 95. I > went on to college and graduated with a B.S. in Civil Engineering and > my Professional Engineer in Training certification. As soon as I > qualified to take the Professional Engineering test, I took it and > have been a Registered Professional Engineer since 1972. > > I realize this sounds like bragging, but wanted to share with the > group that all of us that are 47XXY or some other variation of > Klinefelter Syndrome, do not always fit the classic symptoms for the > syndrome. And, as you can see, am not shy. > > HAVE A GREAT DAY! > Ivan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2002 Report Share Posted August 7, 2002 Hi , > Ivan, > Have you ever determined if you were a mosaic 47XXY? Some people who are > diagnosed as XXY are actually mosaic. At the time of my DX, I wasn't told whether or not I am mosaic, but since that time, I suspect that I am. At this point in time, I am what I am, and am not interested in further testing. Which means that only a portion of > their genes are XXY while the remainder is normal. This is a rather > common thing to happen according to the studies I have read. This can be > a factor in why you have fewer of the symptoms or that they are milder. > I guess the morale of the story is that these conditions vary wildly > from person to person so it is difficult to find a common set of > symptoms for all of us. Yes, that is correct that our symptoms vary depending on many things, including the environment that we were reared in. It is also my opinion, that diet plays a big role in how we exhibit the classic symptoms. Even when I did use alcohol it was not in big amounts. I have never smoked or used drugs. For the last 25 years, or so, I have rarely used caffeine either. I exercise regularly and watch my diet quite closely. My parents also expected lots from all four of us which is also why I feel that I did so well. Our mother read to us when we were small children, which also helped to inspire us to do good in school. I was the first person in my father's family to ever graduate from college, even though I have two older sisters and several cousins that are older than I. > Best of luck and congratulations on the dedication you have shown to > achieve your goals. Thank you and I have a very strong will. If I set my mind on something, I will do all in my power to make it happen. And if someone tells me that I am unable to do something(other than biological things that cannot be changed), I will do almost anything to prove them wrong. HAVE A GREAT DAY! Ivan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2002 Report Share Posted August 8, 2002 > > Kaitain4 > > > > There are a number of us that are 47XXY that exhibit very few of > the > > classic symptoms associated with this Karyotype. I for one, > exhibit > > very few of the classic symptoms. Yes, I am 47XXY and my sperm > count > > in my ejaculate is zero; however, my testicles do have the cells to > > produce sperm heads. The breast tissue that I had to have removed > > grew because of the testosterone that I used for the six months > > before my DX. There are a few of us, like myself that do not deal > > with being obese, in fact, many would say that I am underweight for > > my height. For some of us, our testicles produce sufficient > > testosterone for our needs. > > > > Myself, I use no drugs of any kind, not even over the counter drugs > > and the last time that I have taken so much as an aspirin was in > > November of 1984(only took 4 for acute sciatica) and those were the > > first aspirin that I had taken since 1981. As a youngster, I had > > rheumatic fever three times and the only medication was > prescription > > aspirin and sulfa pills, so I have taken plenty of aspirin in my > > life. At the age of 59, I am in the best physical, mental and > > spiritual condition than at any other time in my life, and I am not > > impotent. I am physically stronger now than when I was DXed at the > > age of 30. I was DXed because my wife and I wanted children and > > nothing was happening. > > > > I have had a full beard for 21 years that I have to trim about once > a > > month to keep it at the length I prefer. Puberty started for me > > around age 11 or 12, my voice changed, and pubic hair grew in the > > male pattern, and I was quite hairy from my pubic area down. I > > didn't have much hair above my pubic area until I started on > > nutritional program at the age of 39. I was literally born(born at > > home) and raised on a dairy farm, which required me to do strenuous > > physical labor at an early age. At the age of 13, I literally > became > > my folks hired man and did the work of a man everyday. > > > > School and learning have always been easy for me, and I graduated > > from high school at the age of 17 and was 5th in a class of 95. I > > went on to college and graduated with a B.S. in Civil Engineering > and > > my Professional Engineer in Training certification. As soon as I > > qualified to take the Professional Engineering test, I took it and > > have been a Registered Professional Engineer since 1972. > > > > I realize this sounds like bragging, but wanted to share with the > > group that all of us that are 47XXY or some other variation of > > Klinefelter Syndrome, do not always fit the classic symptoms for > the > > syndrome. And, as you can see, am not shy. > > > > HAVE A GREAT DAY! > > Ivan A lot depends on the source of the extra X chromosome. If you got it from Dad, you are going to be better off than if you got it from Mom. The main reason is that any X-linked diseases and such that stem from genetic errors are more likely if you have pairs of such genes; then, you get a double dose. Also, there is the phenomenon of X inactivation. Women receive one X from Dad and one from Mom. One X of the pair in each cell partly turns off (inactivates) very early in the life of the embryo. Most of the genes on the inactive X have no effect. When X inactivation occurs in XX cells, about 50% of the Xs from Dad inactivate, and about 50% of the Xs from Mom. X inactivation occurs in men with more than one X chromosome per cell, but it tends to favor one parent over the other. It may also be partial or erratic, so that genes that are turned off in some cells are on in others, leading to divided purposes. This is especially crucial in the brain, which, alas, is not exempt from Klinefelter syndrome. As for mosaicism, my own endocrinologist keeps saying that every human being is mosaic; that if you looked long enough, you would find all kinds of cells with different chromosome configurations. So I asked him to run a second karyotype on me, but the result was the same: 47,XXY in every cell that was examined. Of course, the standard test is performed on white blood cells, so who knows what I might have in other tissues that don't get circulated into the blood. I might have clusters of 46,XY cells, but I'm not about to have random biopsies done just to find them. 47,XXY/Klinefelter syndrome affects individuals individually. I just returned from the national conference of AAKSIS (the American Association of Klinefelter Syndrom Information and Support) which was held in Columbus, Ohio. I met quite a number of other men who are also 47,XXY, and believe me, if you stood us all together for a group photograph you would have seen no physical similarities. In fact, there was no obvious way to differentiate us from any of the 46,XY men (mainly parents) who were there. Most of the adult men with Ks were professionals; mostly in the high tech fields, but a couple in the law (myself included) and one RN. Somebody there told me about a 47,XXY rocket scientist, and one of the doctors related a story about diagnosing one of his own interns. A state rep in Massachusetts was diagnosed with Klinefelter syndrome in the course of fertility testing a couple of years ago. At least one professional basketball player is 47,XXY. So is a dancer at a major East Coast ballet company. We are everywhere. Friends, nothing beats meeting other men who are also 47,XXY or hypogonadal. Being able to see and talk to a whole bunch of guys who have had similar experiences and to find things in common, and to marvel at how different we also are, is a wonderful experience. These listserves are a pale shadow of the real. If you can get to the next national conference, in Seattle, WA in October (it's sponsored by KS & A), by all means, do so. And if you can't make that one, try to get to your regional support group. Bill Quote Link to comment Share on other sites More sharing options...
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