Thank You All!

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Hello Everyone!

i wanted to thank everyone especially Graeme for the information he has willingly made available to everyone. Every bit of information helps every one of us because I believe there are so many variations of this karyotype. Every little bit would be a clue to learn more about ourselves which would help us emotionally and socially.

I have a long story but I will hopefully make it short. I am 48 years old. I learned about my karyotype last year after deciding with my wife that we're ready to have a child. I don't believe that I have the typical physical characteristics of an XXY individual. I am 191cm tall (6'4") and about 93Kg (about 205 lbs). My testes size, according to the fertility doctor, are of normal size (average like an XY man). I have facial hair and have had it since I was 13-14 years old; I started shaving regularly at 15-16 and ever since then. I sought a famous fertility doctor where I live in San Francisco, California, and he had me undergo a "Micro-Tese Sperm Retrieval" but for me and I'm guessing perhaps age and other factors may have played a role in the surgery not being successful.

I was born to a family of physicians. My father, a medical doctor, always used to tell me that the circumference of my chest is small compared to other boys or men my age and he used to push me to do exercises to increase my chest and lung capacity until it was of normal XY average. I am not sure if he knew that his son xxy and if he did, I think it was better not to know and striving to be like everybody else would be better for me as an individual than to constantly be sorry and not push myself to do more and blame it on the way I was created.

When I was growing up and playing around where my dad worked, at around when I was 15, my dad was examining a patient and drawing spermatozoid out of the patients testicle. He would place the semen on a slide and have me look for sperms. Clueless to own condition I checked my ejaculate and found sperms swimming around. Later when I was in college, there was a sperm bank nearby. I recruited my buddies to give this bank a visit to see if any of us were viable. We all tested positive with decent count. As we did the preliminary sperm count test we never went it to continue to do the genetic testing. Had I done that at age 22, I probably would have frozen some for today. 

It took me a long time to graduate from college. It took me about eight years to get a bachelor's degree in biology. I didn't think of it all that much because most of my other friends also took a long time so I thought it was normal. I remember in college around when I was 27 or so I was working part-time in a laboratory performing research. For school I was taking a class called cell biology. Our final grade was dependent on an experiment we conducted the whole semester and we were to present our results in the form of a presentation for the whole biology department. Unfortunately our experiment cells died and I came up with a clever idea to use my ejaculate, video-tape it at the lab I was working part-time and presenting it for our final project. We aced the final with one comment that the associate dean of the school who was present came to me after the presentation to say he has some words he wants to talk to me about. Me getting extremely nervous said what it is you're concerned about. He told me the cells swimming in our video did not belong to the project experiment. He told me they are spermatozoids. He told me that that was clever and he will let us slide. He told me that when he was in college he did the exact same thing. He shook my hand and asked me who else knows about this. I said nobody. He said let's keep it as such. 

The point I'm trying to make is even if you have a karyotype xxy, regardless of whether you want to call yourself a "Klinefelter Syndrome" individual or not, it's never too late to seek a fertility doctor to see if your testes produce sperm or not. It's better if you know way in advance so you can save freeze some for when you're ready to have a child. I am not planning on advertising for any doctor but if you google search best fertility doctor, I'm guessing the one I went to shows up. He has patients from all over the world coming to him. His patients, from what I was told, also have a blog page but I haven't visited it; my wife has.

The next point I wanted to get the readers feedback is how do you deal with reading, comprehension, and recall? I had a miserable time in college taking exams! I would get nervous and forget everything even my name. Did any of you had similar situations? I had another class where our teacher's assistant was a single mother of five trying to get her PhD and go to medical school. I would learn the subject at hand, teach her and tell her the highlights before class, and when exam time came in I would be the one with the lowest grade. She would be puzzled with why I graded so low. She knew I know the material but the ability to use that material on the exam would be just hopeless!

Thank you Graeme for pointing out a few other association of this karyotype like the testicles being so extremely sensitive. My wife or other women I've been with previous to my wife always wanted to play with my testicles but I had told them that it is forbidden. Another problem I had while having sex was sometimes my testicles would get pulled all the way up out of the scrotal sac into the abdominal area; very painful!

Like Graeme, my wife and I have to go through donor insemination (IVF or IUI).

I wonder now if there are other ailments that we have that may be associated to this karyotype. I appreciate if readers will be open with their other ailments. For example since I was ten years old, I've always had problems with eating food that has much black pepper. Black pepper and many other foods and beverages cause a constriction in my esophagus. I sometimes think maybe because I've had this ailment since the time of me being very young, it's possible that it's originating from the same variability of that genotype! Who knows? I know it's a long shot but worth checking with you folks.

I think I have written much for now.

I'm open to discussion or if you need contacts for fertility doctors in the US.

Kirk

1 like, 5 replies

5 Replies

  • Posted

    Well Kirk I'll have to remember you as the second XXY man I've heard of with normally sized (and for a time functioning) testes.  As most XXY's are not diagnosed we can't say for certain what traits are most typical, all we can say for certain is that all XXY's are XXY!  biggrin

    You said "I am not sure if he knew that his son xxy and if he did, I think it was better not to know and striving to be like everybody else would be better for me as an individual than to constantly be sorry and not push myself to do more and blame it on the way I was created."

    I was diagnosed at 17 and not started treatment until after I was 18. Up until 1994 I never knew all the education and social problems I had could be rerlated to being XXY, until then all XXY was, was the karyoptype that lead to Klinefelters' syndrome.  Then when I started learning about how to teach XXY boys in the classroom, I could see old school reports indicating the same.  The method described will work if there's the will of the teachers/parents to apply the methods. Sadly in my case there was no will, just endlessly blaming my failed education on me!

    Later on I read how XXY boys who lived in poor households did decidedly worse than their siblings, and those who lived in good homes did well, or better, but not to the same degreee as their siblings.  I suppose you represent one of those people?

    From my perspective it is the others who do the making up of excuses, and the blaming.  That XXY boys will be much better off being diagnosed as early as possible.  That even if they're not told of their diagnosis their care givers could be, that their lives would be improved.  

    • Posted

      Hi XXYGuy,

      i'm sorry I was not generalizing. I was solely implying to myself when I said had I known earlier I would have done nothing and blamed my condition. Because I know myself, very likely that would be a route I would take but also who knows maybe I would have challenged myself to do more as well. 

      As as a child born to a family of physicians, I am not sure if that is a better thing or worse. When you have your parents constantly take care of other people, I'm not sure how better that is for the child. If my parents knew about my condition why did they not take any steps. Maybe because the country I'm from didn't have the avail abilities that exist in other countries. Maybe their fear of bullying of other kids towards me caused them to keep it a secret; I don't know.

      I came to the US as an immigrant when I was nineteen leaving my parents behind in the old country. I can understand how knowing that I had attention deficit disorder would have helped me in school. I had classmates with this classification and they would get extensive help from the professors and these kids would usually have the highest grades in class and continue on to graduate school or some to medical school. I didn't realize I have ADD or ADHD or whatever it's called until I graduated from college and it took me quite some time to finish school. Had I have the money to seek a therapist to test me for learning disability and have the confidence to classify myself as such maybe it would help me continue with school.

      i understand your point about knowing early. I feel bad towards my wife. In many senses she got screwed. I would feel worse if my parents knew and they didn't tell me so my wife is aware of these issues before she marries me. Prior to my wife and I finding out about my xxy karyotype, my wife and I were having difficult times in our relationship. These issues has helped up overcome many hardships and has created a stronger bond between us. In a way perhaps these circumstances in life show you how much your spouse cares for you in spite of all the bull crap she has to go through.

      Aside from all these things I saw that you're a motorcycle rider. Are all xxy people cycle riders? My brother and I used to go dirt biking since we were ten years old. We still go dirt biking. We now go with my brothers two boys. Recently I put a little money together and treated myself to a 2003 R1150R to do some cruising as well. In your video, were you in the USA where a lot of Harleys were passing through?

      Thanks for your reply,

      Kirk

       

    • Posted

      Hi KIrk,

      No I don't ride bikes, yes I used to a long time ago.  That video was for a friend who was on that ride, near Palmerston North, New Zealand, where I live.  lol  So, no, they weren't anywhere near America.

      When I was 4.5 years old I was diagnosed with Petit Mal Epilepsy, this is obviously something I was told about later in life.  So my parents knew I had an educational problem that is a psychiatric illness, and they made sure I took the medication for it, and I never had it at all. I was misdiagnosed.  If you look up AD/HD Inattentive Type and compare its symptoms to Petit Mal Epilepsy, you will see great similarity.  I'm not surprised it was a misdiagnosis.

      However, even though my parents knew I had a psychiactric illness, it made not one single bit of difference how they treated me.  I was still expected to perform educationally and socially as any other child my age, for all of my childhood, and no allowancew was made for me, as I was taking the medication.  I beleive even if I had a correct diagnosis, nothing would have changed.  So this all comes back to how the XXY boy is treated in the home, as to whether or not he overcomes his difficulties.  I believe Dr Johannes Neilsens' work proves this point.

      To me you appear to have had really good parents who positively influenced your life, to the extent that even though you did have problems, you surpassed them.  You were armed for future success by your parents who knew nothing of your XXY status.

      In my opinion.  smile

       

    • Posted

      Thank you for your kind words. I believe they didn't know about my xxy either but I'm sure they knew about my ADD/ ADHD but boys are boys and with my brother and I always on the streets playing; it was difficult to get two boys to study. I guess you have your own share of responsibilities with your boys. How do you get them to study?
    • Posted

      I have a daughter and a son, my daughter lives with me, and I don't get her to study, I inform her that a good edcuation is the start of a happy life. At 16 if she's not learned good study techniques, there no hope for her!  She as smart kid, well liked by others, popular with teachers, she has all the right advantages, not like me at all.   

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