Klinefelter's Syndrome Support Group
Klinefelter's syndrome is a condition caused by a chromosome nondisjunction in males; affected individuals have a pair of X sex chromosomes instead of just one, and is associated with additional risk for some medical conditions. XXY males are almost always sterile, and some degree of language impairment may be present.
Hi guys I'm new to these forums. So recently like 13 of January this year, I got diagnosed with ADHD. After 1 and a half month of hell living on Vyvanse, (23th of February) I told my doctor something must be wrong. He asked why and I replied it doesn't help me with anything just gives me bad side-effects etc. He then replied you might something called Klinefelter syndrome. So he wanted to take a blood sample for further evaluation.
So my day today have been searching the depths of the internet for information about klinefelter, as I had no idea what it is never heard of it. But apparently some of ADHD symptoms is part of it if I read it right.
Also I think I have small testicals? Not sure since I never felt another mans testicals. But mine are the size of cocktail olives the closest thing I could compare them to. Also my projection of height in the growth curve was 184 cm (6 ft 7/16 inch) not to good at these none metric systems. But I turned out at a whopping 197 cm (6 ft 5 and 9/16 inch). More to the fact I have way broader hips then a lot of the women I know. Thin arms and legs with an inability to gain muscles been training a lot. Furthermore I'm not able to lose the belly and manboobs I have for some reason. My manboobs sorry for using this term don't know the correct one. Anyways my manboobs blossomed with puberty and also my grades started to drop drastically I was always ahead of my class pre puberty.
As for my hair my head hair is thick and luscious. Anywhere else on the body is rather none existing. Legs looks shaved arms looks shaved got that one chest hair that looks sad and alone. Back and butt hair I have none. My happy trail consists of five strands of hair and my pubic area have hair but not nearly as the extend as my male peers. My armpit hair is a joke it's a rather small bush like 2x2 cm ( 0,8 inch) in a really light brown color, also like my pubes it's very sparse. My so called beard is sparse dots randomly assigned in my face like 5 dots in the face and some bigger regions on my neck which are also very sparse.
As a kid I was always picked on because I got such a short temper.
Which I always taught was because my dad walked out on me. But when he came back 7 years later it was the same still angry kid being angry. But after puberty all my anger disappeared and turned into apathy which I still have. But with the ability to go into depressive episode suicidal taught and attempts I had my fair share of. Self harm is something I've done a couple of times but stopped with it because I felt nothing. I thought I would feel something from it but didn't. Always had a hard time remaining in a relationship. I have felt what I think is love 2 times since I had my first relationship at the age of 15. The first time was the first relationship I had which I had for 2 years kinda. Under those 2 years I broke up with her once for not having any feelings left. That lasted a week then I begged her to come back because I missed her. Got some feelings close to what I think love is. But after 4 months they disappeared and I ended it again. To this day I had 5 relationships that have lasted between 9-12 months then I have ended it because of no feelings. Never felt what I think love is for them but there was something else there. But whatever that was faded as well until I got tired of my socially other which always happens. Today I'm in a relationship where I feel love and also loved. I really do hope this lasts longer not sure if these emotionless/apathy things are klinefelter related.
Anyways I never really felt like mmmm.... I wanna have sex! More or else I have done because I think it's fun but not because I'm in that mood. Had 1 morning wood in my life as far as I can remember. Also never had any spontaneous errections. Thinking of having sex with someone rarely cross my mind I more or less think of cuddling with that person for some reason. Instigating sex I rarely do due to lack of labido. But on later years starting around my twenties I have a harder time getting and remaining erected. And to that I never get that real hard on as I previously experienced. The hardest I get nowadays is above semi hard still a bit bendable and also soft on the outside and a bit inwards. But to that I'm as hard as ever at the core of the penis.
Earlier this year I went to community college and tried to achieve some missed high school grades. I've tried this before but in vain so this was my fourth time trying it. Since I got diagnosed with ADHD and was receiving treatment for it as well, I thought well this will be a walk in the park. I'm not an unintelligent person I have a rather great depth of insight in most subjects and an IQ of 137. But since I hit puberty my ability to focus decreased so much like it feels like I have no attention. I can want something rather badly but taking the steps is to much of a hassle for me even if the steps are easy like attending the classes. I have no energy to go to the classes nor the focus to retain the information. Since I already know most of the things we learn there doing the tasks we get seems like a waste of time to me. It's rather hard to explain that part but I know I have to do them I want to do them but still something in my mind tells me not to do them. Same goes for homework even if I start I can like go to the toilet then forget I had homework. So school have been really hard since middle school.
Also other issues I have don't know if related to klinefelter. Memory my short term memory is really bad. Bad joints: all of my joints are really stiff also my wrists, fingers, knees, shoulders and knee joints tend to hurt on a regular basis. Skeleton even though I have rather good training regime. My back hurts everyday been doing so for 10 years. Asked doctor about it and they say I have to muscles and need to train. When I tell them I train they don't believe me due to no muscles. Also I train without motivation or energy for it. Sleep: since puberty I have been sleeping a lot more than everyone I know. I usually slept for 10-14 hours a day. But for the last 3-4 years I've done the opposite sleeping for a few hours like 3-6 then up for a couple of days like 2-4 then go to 12-16 hours sleeps and it kept repeating. Last Saturday I got Zipoclone and it works like a charm. Clumsiness: for as long as I can remember I've been clumsy. As a child I hard time doing sports due to clumsiness and to this day I still do. Sometimes a lose my balance and stuff while walking due to I put the weight of my balance on the wrong side of my body. When I was a kid I was always really outgoing and talkative, but with age I've been more introverted and can't lead a conversation. Don't know if this is a symptom. But I always been this guy that want to help out everyone in whatever way I can. Also always try to make everyone happy even though I never feel happy myself. When I was younger I really looked forward to things like the weekend. But for so many years now I never look forward to anything nor feel anything when I lose anything. Like last year my best friend for 18 years died I haven't missed him at all didn't feel sad about it or anything. Also I have always felt "alone" even though I'm surrounded by friends/family that loves me. Even when I have been with previous girlfriends I feel alone.
Sorry if the text is messy and stuff like that. But I have always been better expressing myself through writing then speech. But I have always had a hard time with punctuation, commas and putting the text into segments. Well anyways guys if you could give me an input if anything of the above makes it sound like I have Klinefelter syndrome I would be grateful. I know I have the test to do at my doctor but getting some feedback from people who have it gives me a bit of reassurance.
So my day today have been searching the depths of the internet for information about klinefelter, as I had no idea what it is never heard of it. But apparently some of ADHD symptoms is part of it if I read it right.
Also I think I have small testicals? Not sure since I never felt another mans testicals. But mine are the size of cocktail olives the closest thing I could compare them to. Also my projection of height in the growth curve was 184 cm (6 ft 7/16 inch) not to good at these none metric systems. But I turned out at a whopping 197 cm (6 ft 5 and 9/16 inch). More to the fact I have way broader hips then a lot of the women I know. Thin arms and legs with an inability to gain muscles been training a lot. Furthermore I'm not able to lose the belly and manboobs I have for some reason. My manboobs sorry for using this term don't know the correct one. Anyways my manboobs blossomed with puberty and also my grades started to drop drastically I was always ahead of my class pre puberty.
As for my hair my head hair is thick and luscious. Anywhere else on the body is rather none existing. Legs looks shaved arms looks shaved got that one chest hair that looks sad and alone. Back and butt hair I have none. My happy trail consists of five strands of hair and my pubic area have hair but not nearly as the extend as my male peers. My armpit hair is a joke it's a rather small bush like 2x2 cm ( 0,8 inch) in a really light brown color, also like my pubes it's very sparse. My so called beard is sparse dots randomly assigned in my face like 5 dots in the face and some bigger regions on my neck which are also very sparse.
As a kid I was always picked on because I got such a short temper.
Which I always taught was because my dad walked out on me. But when he came back 7 years later it was the same still angry kid being angry. But after puberty all my anger disappeared and turned into apathy which I still have. But with the ability to go into depressive episode suicidal taught and attempts I had my fair share of. Self harm is something I've done a couple of times but stopped with it because I felt nothing. I thought I would feel something from it but didn't. Always had a hard time remaining in a relationship. I have felt what I think is love 2 times since I had my first relationship at the age of 15. The first time was the first relationship I had which I had for 2 years kinda. Under those 2 years I broke up with her once for not having any feelings left. That lasted a week then I begged her to come back because I missed her. Got some feelings close to what I think love is. But after 4 months they disappeared and I ended it again. To this day I had 5 relationships that have lasted between 9-12 months then I have ended it because of no feelings. Never felt what I think love is for them but there was something else there. But whatever that was faded as well until I got tired of my socially other which always happens. Today I'm in a relationship where I feel love and also loved. I really do hope this lasts longer not sure if these emotionless/apathy things are klinefelter related.
Anyways I never really felt like mmmm.... I wanna have sex! More or else I have done because I think it's fun but not because I'm in that mood. Had 1 morning wood in my life as far as I can remember. Also never had any spontaneous errections. Thinking of having sex with someone rarely cross my mind I more or less think of cuddling with that person for some reason. Instigating sex I rarely do due to lack of labido. But on later years starting around my twenties I have a harder time getting and remaining erected. And to that I never get that real hard on as I previously experienced. The hardest I get nowadays is above semi hard still a bit bendable and also soft on the outside and a bit inwards. But to that I'm as hard as ever at the core of the penis.
Earlier this year I went to community college and tried to achieve some missed high school grades. I've tried this before but in vain so this was my fourth time trying it. Since I got diagnosed with ADHD and was receiving treatment for it as well, I thought well this will be a walk in the park. I'm not an unintelligent person I have a rather great depth of insight in most subjects and an IQ of 137. But since I hit puberty my ability to focus decreased so much like it feels like I have no attention. I can want something rather badly but taking the steps is to much of a hassle for me even if the steps are easy like attending the classes. I have no energy to go to the classes nor the focus to retain the information. Since I already know most of the things we learn there doing the tasks we get seems like a waste of time to me. It's rather hard to explain that part but I know I have to do them I want to do them but still something in my mind tells me not to do them. Same goes for homework even if I start I can like go to the toilet then forget I had homework. So school have been really hard since middle school.
Also other issues I have don't know if related to klinefelter. Memory my short term memory is really bad. Bad joints: all of my joints are really stiff also my wrists, fingers, knees, shoulders and knee joints tend to hurt on a regular basis. Skeleton even though I have rather good training regime. My back hurts everyday been doing so for 10 years. Asked doctor about it and they say I have to muscles and need to train. When I tell them I train they don't believe me due to no muscles. Also I train without motivation or energy for it. Sleep: since puberty I have been sleeping a lot more than everyone I know. I usually slept for 10-14 hours a day. But for the last 3-4 years I've done the opposite sleeping for a few hours like 3-6 then up for a couple of days like 2-4 then go to 12-16 hours sleeps and it kept repeating. Last Saturday I got Zipoclone and it works like a charm. Clumsiness: for as long as I can remember I've been clumsy. As a child I hard time doing sports due to clumsiness and to this day I still do. Sometimes a lose my balance and stuff while walking due to I put the weight of my balance on the wrong side of my body. When I was a kid I was always really outgoing and talkative, but with age I've been more introverted and can't lead a conversation. Don't know if this is a symptom. But I always been this guy that want to help out everyone in whatever way I can. Also always try to make everyone happy even though I never feel happy myself. When I was younger I really looked forward to things like the weekend. But for so many years now I never look forward to anything nor feel anything when I lose anything. Like last year my best friend for 18 years died I haven't missed him at all didn't feel sad about it or anything. Also I have always felt "alone" even though I'm surrounded by friends/family that loves me. Even when I have been with previous girlfriends I feel alone.
Sorry if the text is messy and stuff like that. But I have always been better expressing myself through writing then speech. But I have always had a hard time with punctuation, commas and putting the text into segments. Well anyways guys if you could give me an input if anything of the above makes it sound like I have Klinefelter syndrome I would be grateful. I know I have the test to do at my doctor but getting some feedback from people who have it gives me a bit of reassurance.
livingwithks
Hey Mitch...hang in there! I can relate to just about everything you stated. You'll need to go see an an endocrinologist, tell them you suspect KS- if they are good doctors - they will check you out and run blood work to determine your actual testosterone levels and karyotype(this will confirm the diagnosis). for me testosterone replacement therapy was my saving grace and has been for the past 15 years as part of my daily routine(as much as I resent needing to rely on a gel to feel like a man/human being) For me, testosterone replacement therapy helped me to focus, gain muscle mass, gain strength, boost my confidence, grow facial hair-essentially all the male characteristics that were missing pre-diagnosis. The only thing that did not return is fertility...also a touchy subject but but nothing you can't work through. As much as you may dislike many of the attributes that come with this condition (as I had)- they have contributed to who we are today and in my opinion, we are in many ways better and more compassionate than our normal testosterone peers. While its needed to compare ourselves to others to steer toward a diagnosis, there is no need to compare yourself to others to determine your self worth or your potential to achieve great things. If you do have KS - at least your thoughts and feelings will be validated and then you can begin to work toward improving things. We can learn to live with KS and having the support from your peers will make it that much easier. My advice is ....take it one step at a time and you will work through this. Feel free to ask me anything and post your progress.
sport
I was born along time ago and never knew that I never developed sexuality micro penis and very small testicles no hair on legs or arms.Any thoughts?
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