Thankful To Have Found This Forum

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I found this forum and hope that I can find advice and support in the near future. The current depression that has become worse than ever at this point in my life, makes my life very difficult and almost impossible. I am on antidepressants and antianxiety meds, but on of the major reasons for my depression is to do with having no one in my life who understands what it's like to feel so different and to have a rare condition that comes with many problems and is also in an area of illness that the majority of people still don't understand. I am very thankful to have found this forum.

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  • Posted

    If you think you have problems, it is nothing what I have gone through with 47 chromosomes. I have about 20 different types of medical problems, but no depression. I am what I am. After 2 years in recovery, I have to learn to be comfortable wearing two prosthetic devices on my legs. I have a below the knee prosthetic leg on my left leg and a partial foot on my right leg. Plus I am on dialysis three times a week. You would think I would be depressed. Sometimes I am but most of the time I feel great. At least, I am alive. No I cannot get a kidney transplant because of my many medical problems. I am happy for those people who can get a new kidney. Why be depressed over something I cannot obtain. I hope this helps you.

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  • Posted

    Hello Scott9999,  Hopefully your post will attract lots of different perspectives.  Of course I've always been XXY, I just haven't always known, and almost always I think differently to most other people, I've always been that way.  Very occasionally someone else is on my train of thought, but mostly they're not.

    Once upon a long time ago a psychiatrist tried to say I was depressed, well if I am 'better the devil I know' I say.   The medication to treat Depression has side effects that will worsen my sex life, and I really don't need any more problems in that area, so I declined that medication.  Please don't think I'm advising you to stop your medications, you should only take the advice of trained medical professionals.

    When I was diagnosed in 1976 there was literally no information apart from what could be gleaned from library books, and that was pretty useless, as every snippet said we XXY's were mentally retarded.  In fact when I tried to tell people about what I was diagnosed with, they'd go look it up too, then tell me I was a liar, as I'm obviously not mentally retarded.  I even determined for myself that my doctor must have made a mistake, it must be something else.   However, by the time I saw the Endocrinologist, with all the checking I'd done, I'd made up my mind that I was indeed XXY.  There was no mistake after all.  Pity really, I could have done with another medical mistake!  When I was 4.5 I'd been misdiagnosed with Petit Mal Epilepsy, whereas in fact I had, and still do have, AD/HD Inattentive Type. I can safely say I had a miserable childhood, a miserable adolesence, and yeah, not exactly a great adulthood either.

    From my perspective, the thing we can't achieve is the biggest problem we all share,  that is whatever you haven't been able to master will always be a problem until you do, and you may never get to that point.  XXY's tend to worry over trivial things, and really big issues  they tend to ignore.  I have 2 children by donor insemination, so infertility is not an issue anymore, but once it was all I could think about.  I have always had problems forming relationships, yet I pretended it was my infertility that was the cause, even though I was a teenager when I was diagnosed.  Clearly being infertile was not the cause.

    Anyway, I maintain these days XXY's are incredibly lucky whenever they're diagnosed, as they have the internet, they can find out so much more information than I ever could.  So not being able to find information was a big problem for me initially.   At that time getting information was all I could think about.  Then, after years of searching, I discovered most of the information I'd gathered didn't apply to me.  When we're diagnosed it's with Klinefelters syndrome,  and males with KS can be of a wide variety of karyotypes, and that's why the library books maintained we're all mentally retarded, as back when I was diagnosed most of those with KS were not  XXY's, but XXYY's and XXXY's and XXXXY's and the more X's present the greater the degree of mental  disability or retardation.  Which was also why KS was said to be rare, when it isn't!  XXYY and XXXY and XXXXY are rare, but KS the disease they get, is very common when the XXY's are included too.  

    So I reckon the medical profession collectively owes us an apology, but they don't, they think they're doing us a favor by getting us diagnosed, and usually diagnosed late!  

    Anyway Scott9999, nice to see you searching, you can't do yourself any harm by finding information relevant to your circumstances.  Be prepared though to sift what you find, much of it won't have anything to do with you.

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    • Posted

      Years ago, about 35 years ago, I read about xxy's being in criminals and mentally retarded in the US. Then when I researched those papers, I discover the medical professionals interviewed those xxy's in prisons and mental institutions, so many doctors relied on that information, even today. So you really can't rely on outdated information. I am 64 years old and I still search the Web on xxy. Something new is always there. In the US, some institutions are now researching xxy's xyy and xxx. As I indicated before, most xxy's are unique and totally different than the next male xxy

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    • Posted

      Yes, if you were a researcher and you wanted to find a great many males to study, where permission was not necessarily sought or needed, the best places to go were prisons and mental institutions, back then, back before 1976.

      Patricia Jacobs made that mistake when researching XYY males,  she's the same woman who (along with her colleague Strong)  discovered XXY in one KS male and determined from there that all XXY's when born had KS.  Anyway; because she only studied XYY males in institutions she determined all XYY males were criminally minded, or her research was interpreted that way by Geneticists and other doctors?  

      When it comes to XXY's, the worst aspects found in research are the aspects promoted as being typical.  Such as logitudinal studies have indicated most XXY's have a normally sized penis, and a few have a short penis, so now all XXY males have a short penis in the online literature, as no attempt was ever made to differntiate the symptoms of males with more than 1 additional X, who have more extreme symptoms,  and those with just one additional X who conversely have less extreme symptoms.

      But I read longitudinal, and case studies, and my own personal medical record, which is the best information of all.

       

      If you read carefully what I typed you can see I was describing a time when I was first diagnosed, and how today XXY's are so much better off than I was.  I can rely on any information I like,  and I will need to like it to rely on it! cheesygrin  You have misread what I have typed.  Misreading typed information is a common flaw of XXY's.  It has actually been studied, the educational problems XXY's have, and they form in a particular fashion, even though not all XXY's have educational problems.   

      So if we're all 'unique' how can it be that similar types of problems manifest?  You think I'm relying on old information whereas I'm only reporting an old situation, my actual experience, at that time.  

      How can "most XXY's (be) unique and totally different than the next XXY male?"  Surely it must be that if we're all unique, then ALL XXY's are different to the next XXY male?  But then that would discount any possibilty of commonality,  to study us there must be some things we have in common, and not unique, if you think about it?

      I can tell you what I have that is unique to me that you probably don't have.  My parents, I don't think my parents are your parents.  My parents genes, I don't think my parents have shared their genes with you.  The degree of skewed X inactivation I have compared to you.  Yet by what you have typed I can see you have reading problems, comprehension problems, typical problems associated with being XXY.  So it is the differences that that we have that make us unique, not the similarities, the additional X is a similarity.  The part of us both that is studied, that which makes us worthy of investigation.

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    • Posted

      Since you found out my shortcomings, I have a condition called short term memory. Do you have it. Do you have dyslexia. Do you have lupus. Do you have diabetes. Do you have a thyroid condition These are some symptoms of xxy. These may or not be part of your life except they may affect some or none. You may also have male sex organs and have internal female organs and still be an xxy male.This is why I label xxy's as unique.

      Some men who take testosterone shots may only grow a beard.Other men may not grow any facial hair, but haver hairy legs. Testosterone effects xxy men differently. I am not a medical researcher. I am curious about xxy traits so I go looking for them on websites. Having short term memory is not what you want. I didn't recall what you wrote, so I only added what I thought you should know. Some of these traits I found out from xxy men at a convention held in Denver Colorado. Even other year a convention is held in the US regarding xxy and other chromosome disorders. That is where I obtained the unique traits of xxy's

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    • Posted

      Do you know that every single natural born male on the planet has a vestigial vagina?   On another thread you started I've answered your other questions.  

      My doctor says, and I agree, that testosterone affects all people the same ways, to what extent that testostgerone is seen is what varies.  I met an XXY guy on YouTube recently who claims to be allergic to testosterone patch, and every other testosterone product I suggested he could take instead.   Then he appeared in a video with a full face beard, so I conclude his allergy isn't that severe, or he can tolerate the allergy better than he originally claimed, or he's mistaken?   rolleyes

      I took the standard recommended dose for a good 20 years with no discernable beard growth!  I was waiting and waiting and nothing happened, not until I massively overdosed (under medical supervision). So then I did grow a full face beard.  I also grow hair everywhere else too, although not as strongly as some other males I know.  If I got a dose of testosterone when I first started puberty that steadily increased to regular or average XY level by the time I was 25, possibly I'd never have needed to overdose?

      When I let it grow, I have straight (not curly) pubic hair, which I've always had since soon after the onset of puberty.  Without testostgerone I have only female pattern pubic hair, which is exactly the same for every other male on the planet soon after the onset of puberty.  It's increasing testosterone that causes male pattern pubic hair to develop, and the first public hair that develops is caused by adrenal hormones not gonadal hormones.  So all people  develop the same type of pubic hair to start with.

            

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    • Posted

      I assume you're talking about "poor short term memory?" Everybody in the world has short term memory.  If you have a problem with poor short term memory why don't you do something about it?  And your problem with your balls traveling up, do your doctors not offer you treatments to prevent that?  

      If you're ever looking at teenage boys you may see they have very hairy legs first, then develop more body hair in other places.  They can quite easily have very hairy legs and no facial hair at all.  That's just where they're at in their puberty.  XXY males stop puberty at some point, and where they're at is where they stay until they get the right amount of testosterone to cause them to continue.  So a 40 year old XXY adult can be at that stage, hairy legs and no facial hair as thast's where their puberty stalled.  Why, I ask, if they don't like the way they appear, don't they or their doctors do something about it?  Are they like I was, did they just not ask for help?  Doctors aren't mind readers, if we don't tell them what we don't like they won't know, or be able to help.

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  • Posted

    First of all, thank you to everyone who replied to my message. These days I have one of my parent's, is the only person who I can talk to about anything, besides the therapist I see, who only deals with my feelings and medication. So having people reply to my post means a lot to me, even though that's sad, but I still feel the need to say thank you.

    Up until I became sick, I was a people person and I enjoyed talking and chatting with others just because that's who I have always been. Which is one reason my depression is so severe. I did have a best friend who I lost to a car accident in 2009, which was the year I was making tons of progress and starting to feel better and not so alone. Still after everything I kept going and never gave up hope to this day.

    I'm trying to be strong and push myself as hard as I can, so that I can be healthy enough to help my Mom who really needs my help due to her health issues and lack of support, but it's hard when you have health issues of your own.

    I'm not very resourceful these days when it comes to getting online and trying to share my story, make friends, and work with others to give and receive support. I've lost over 10 years of my life to illness and misdiagnosis, but I believe that there are still good people out in the world who, like myself, want to join forces and tackle these illnesses or symptoms together. I definitely believe that their are strength in numbers and plan on recovering one way or another.

     

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    • Posted

      Not only do you manage to ask questions and make replies, you also spell well.  I don't know why you think you're not resourceful, you seem very resourceful to me.  biggrin

      Talking to parents, that wasn't a strong point for me.  They decided to tell all my relatives about my 'condition' without even asking if they could, so everybody in my family kept quiet when I was about.  They all now knew why I was so different.  

      After many years of therapy, I have been taking Testosterone for 38 years, Methylphenidate for 10 years,  when my parents got sick because of age, I was perfectly positioned to care for them, as I was required to.   I just helped out as my brother and sister also helped out.    

       

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    • Posted

      Thank you for the positve comments. I'm not use to hearing anything positive and non hurtful, so it's a very nice change.

      I am taking testosterone injections, but I know that there are most likely other supplements of meds out there that can help me, but because my dad and brother think I'm just crazy and not trying in life enough and everyone in my life has bailed on me, I don't have people to interact with me other than my therapist who is only there for the depression and anxiety

      I know I haven't been a member of the forum for very long, but if anyone would be willing to exchange messages or chat with me at this time in my life about my condition, I would be extremely greatful. It's hard for me to post of the forum because my depression is so severe, but a lot of my depression is about things that I can't talk about to my family and I have no where else to go. Either way, I am thankful for any help and advice I can get. 

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    • Posted

      I am seriously reluctant to chat to people in private about anything to do with XXY.  

      More than once others have come to me privately getting me to talk to them about personal problems, then releasing their version of those conversations publicly.  One time I did make a whole conversation public, then I was accused of  betraying a confidence!  So rather than put myself in an impossible,  "damned if I do, and damned if I don't" situation, I prefer public conversations only. Everything said is what everybody sees, as it happens.

      So if you can't talk publicly,  I can't talk with you.  

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    • Posted

      I am really sorry to hear about your past issues with these dishonest and rude people, so I completely understand your decision and respect that.

      I figured that I have to be very safe and smart about what I say online and I will continue to be careful.

      If you wanted answers and support about information involving problems with that you have a hard time talking about with others that involves these kinds of health conditions, is there some place on line that you could refer me too?

       

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    • Posted

      Me, refer people, now there's a first!  cheesygrin  Actually I usually send people to the KSAUK or the Americans, genetic dot org, aka AXYS - I'm certain they have contact with people, yes I know they do.  Me referrring people doesn't mean I agree with the organisations,  the information they produce,  the rfesearch they're involved with, just that I know they're there and have contact with people, that's as far as my  personal 'support' goes.  I am a clever person, I can, and regularly do, think for myself, and I find these 'support' groups tend to want people to follow their lead.  They doin't want 'discussion' they want 'compliance' as if we all really are little boys who never grow up!  

      What I haven't seen over the years is more than 1  grown up XXY man report how when he was a a child his parents were involved in these groups.  My daughter is 18 now, and some of these XXY boys were older than she was when I met them, when she was 3.  So now they must be adults, I wonder what they're doing?  I wonder if having access to information (if tghey received any?) made any impact in their lives?    If you can find those people, they'd be worth talking to, I bet!  

       

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  • Posted

    Sorry I didon't reply to your message in a timely manner. Going through my emails and found I had not replied to you back then Again, forgive me. I live in the US and the only thing that I I heard about one xxy male was when he posted his address to another xxy, he got an unexpected guest at his front door and then that person became a stalker. He wouldn't leave him alone. Since he was afraid of this guy, he longer wanted his address posted. I had one xxy insisted I corresponded to him and wanted me to give out addresses to the xxy's I found out in magazine ads,He was so persistent that I never responded to him. Some of the xxy men didn't want their address exposed. I should tell you the ads I posted were in gay publications.

    At that time, I was corresponding to about 10 gay xxys. But all my correspondence is now in storage and I haven't heard from any of them in over 10 years. I had a postal box to get correspondence from these individuals since I thought I could be safe that no one could come to my house uninvited. So you never know if the person will be friendly

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    • Posted

      or a pest. Be careful as xxyguy as indicated.

      The groups he mentioned are focused only to inform parents on what to expect. There are some adult support groups out there but I assume they are heterosexual forums. I haven't explored any of the's group discussions. Maybe you can seek these groups out. I will have to find out later where to find the support groups for you, so be patient.

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