Klinefelters

Clayton,

Just read you post....wow I am not alone. I am a 50 year old (Irish) man with the body of a 16 year old boy with mild to severe case of Pectus Excavatum. Lifting weights on and off my whole entire life with no real results, lifted for 2 1/2 years straight and the only compliment I received would be ...you look healthy. Any body else that spent that much time and energy would be on the cover of Flex Magazine.

Having severe night sweats lately and decided to go to my GP. This is the same GP that prescribed me Anti Depressants to stop my mind from racing and quell my erratic behavior 10 years ago. So we are doing blood work, of course I tried to tell him about family history of Chromosome problems but I think I know more about Klinfelters and Mafan Syndrome than he does.

I insisted on testosterone levels to be checked. I told him I am maybe diabetic or going threw a male menopause... he had no idea what I meant on male menopause (47XXY)

Like you school and adolescence was brutal.. being made fun of and female rejection. It's the only life I now. Thank god I have only 15 to 20 years left of this vain earth.

Hello Guys, my name is Graeme, how do you do?

I was diagnosed with KS when I was 17. Life has been a struggle. Being diagnosed earlier doesn't seem to make any difference, mainly I think because the medical profession is only just starting to work out proper care options. They are finally working out what I've known for a long time, we are all different. We cannot be placed into a specific treatment regime, and expected to well with it, what's good for you might not be good for me.

I've written a blog, I deal with lots of issues to do with KS,

http://xxytalks.wordpress.com/2013/05/25/who-should-be-referred-to-as-having-klinefelters-syndrome/.

Yes, I'm from New Zealand.

Emis Moderator comment:Added link to blog as discussed with Graeme, if anyone does wish to contact directly please use the Messaging facility.

My shrink wants me to see a psychologist to better help me understand thisXXY and to help me to deal with it.

My ADHD meds are still being increased,I can tell a little my mind has slowed down,But when people talk to me,I dont get everything they said,Its frustrating,I dont know what kind of experimental drugs they may want to try,I deal with the VA,Im a veteran.

Ive been in touch with my family,to let them know what they found,Im getting some intrest out of them,Ive always tried to stay in touch,But they didnt want to hear from me at the time,Now when I talk with my mother,She tells me I sound better,and our conversations last up to an hour,Before ADHD meds,We wouldnt talk 3 minutes,Hello,Goodbye,That was it.

I want to get better,But all my adult life they treated me with anti depressants,I quit taking ,what a waste of time,Im curious to get with this Dr.see what he has to say,thats not till the end of this month,Im interested in emailing men with KS,so I can learn some from them,and the difficulties their having,I feel like an Orphan,no kids,and a family that just would rather stay away from me,so their on the east coast,Im on the west coast,Its been good for me to be away from all of them,I felt like I could breathe again.

I have hopes of maybe getting my high school diploma GED,would be the easiest to try,Im 59,what a life this has been,I wouldnt wish it on anyone,Abortions werent as popular as it is today,I should have been aborted

That's so, interesting, I'm just in the process of going through my medical records, my Endocrinologist wrote a letter to me Psychiatrist asking if he can put me in touch with a Psychologist who can assist me in better understanding my condition. That was in February 1989. The letter also deals with changing hormone types of therapy, from Panteston to Pellets, mood problems, irritability, the possibility that mood was affected by the hormone therapy itself, which my doctor notes 'he has not seen in Klinefelter's patients or hypogonadal patients but is technically possible' and I disagreed, the mere act of taking hormone therapy improved my sense of well being, which when it did have its effect was bolstering that sense. That not taking hormone therapy led to tiredness and irritability and less interest in remembering or being bothered to take it. Not taking the therapy led to an spiraling downward effect of mood and sense of well being. Since I had my level of testosterone massively increased I've not had mood or irritability problems as I never let my level drop to an undetectable level, I'm always overlapping doses.

ADHD I've had treated for the past 8 years only, even though I've had it all my life. Maybe as an older person you will be able to accomplish more educationally? Whatever habits you learned previously may hinder that improved ability, old habits die hard as they say.

Hello, My name is John and I am 47XXY Klinefelter's Syndrome.

I was diagnosed more by accident than anything else when I was 36, I am now 70 but when I was diagnosed I was told there was no treatment for KS, so I made do for years and suffered many of the problems others have listed here.

But in 2002 I surfed the net and came across the Klinefelter's Syndrome Association which really helped me They have a quarterly newsletter containing the experiences of other KS men and boys; they have a n Activity Week-end where one can meet lots of other KS folk and compare notes; they have an Annual Conference where distinguished doctors, expert in KS. come and speak with us, then answer questions from the floor. Again, this is another opportunity to speak with others with the condition. And lastly, they have their own websites www.ksa-uk.net and www. XXYTalk.com.

www.ksa-uk.net is a free information website with lots of latest development of the condition available to peruse. XXYTalk.com is an international forum or notice board where you can write your own experiences and get support from other members. It has a resident doctor on board too for medical questions plus a wealth of archive material on KS and related issues to satify the most curious and interested alike.

Write to me at mantalk@ksa-uk.net and I'll be happy to point you in the right direction.

The Klinefelter's Syndrome Association is a registered charity No.1058319 And is run entirely by volunteers. We have a National Executive Committee which meets three times a years to arrange Conferences and other KS events like the Activity Week-end. So come and join us, you won't be sorry. John

XXYTALK is owned by KSA-UK as far as I know, it was started by an American guy but they took it over. I've been banned from XXYTALK for 99 years, because, no reason was given. XXY guys are like that, temperamental! Not often very rational and incapable of following their own rules. I had actually left a long time before they banned me, and didn't shut down my account, So one of the people that run it sent me a private message then banned me, so it was one of the owners/moderators. That was pretty immature behaviour.

Oh and the reason I went back initially was a report given me that 1, they were talking about me, someone was saying something nice, and 2, my profile image had been changed to an offensive saying. Again that had to have been done my an owner/moderator.

So they're pretty much little kids pretending to be men, and I have absolutely no time at all for any of them. But if you don't mind being abused by those fellas, yeah feel free. Personally I don't see the point in joining groups for XXY guys, they're generally just not mature enough to control themselves like the adults they are.

However you can always check out the newly created NZSCS website, Facebook page, and send emails to nzscs@nzscs for information minus the childishness dished up by the KSA-UK.

So this is the Facebook page, it's been there a little over 3 weeks and has nearing 300 likes, so of the XXY/KS pages that exist on Facebook it's one of the biggest, and is the biggest from New Zealand:

https://www.facebook.com/NZSCS

This is the newly created New Zealand Sex Chromosome Society website, which in time will have the most extensive range of information for people with a Sex Chromosome Aneuploidy, regardless of their sex. At the moment it's pretty simple, written by me, but I intend it to be professionally redesigned with New Zealand specific information.

http://www.nzscs.co.nz/

And as stated earlier, this is the email address for the NZSCS

nzscs@nzscs