i have a question about my body

[krisalyx]

ok now this is a bit of a tough question i'd done some basic research and yes i believe i do have klinefelters but and odd question has popped up does it cause wide hips in boys effected by it and could it cause stifness in limbs from say birth to 5 years old?

[Aseras]

You believe you have it? Were you told you have it, had the approriate chromosome testing done?

Once you get into genetic issues, many many things can happen and there's huge variations involved. You can't diagnose things based on appearance or symptoms really. Only that certain features are more common.

[Kailana]

oh ouch, just lost my post, lol trying to get some descent medical case study links up.

Lots of support sites offer some information, as I am rebuilbing my intersex research case study database I have a few handy. i generally don't offer links, or seldoom due. but here goes you may find something usefull at one of these sights I would check the first as it tends to deal alot more with kids then adults.

The Amercican Academy of pediatrics, lost of articles are just transscript though several are available free of charge.
http://pediatrics.aappublications.org/

The New England Journal of Medicine: requires subscription, but has a 21 day trial period so might be usefull to you.
http://content.nejm.org/

Journal of clinical Endocrinology
http://jcem.endojournals.org/cgi/search?qbe=jcem;jc.2007-1115&journalcode=jcem&minscore=5000

can't rmemeber what this one is, but who knows.
http://www.wjso.com/content/5/1/71

Obstetstrics and Gynocology: very handy as well with lots of articles
http://journals.lww.com/greenjournal/pages/results.aspx?k=45XO%20complicated%20karyotype&Scope=AllIssues&txtKeywords=45XO%20complicated%20karyotype


blah, anyways again just trying to help. And try to remember that it is very easy to get lost and misslead with conditions. You can easily believe you have one conditon and instead find out you have another.

Just for simple clarification, a low level PAIS male could look exactly like someone with Klinefelters, and they are different conditons.

Oh and talk to a doctor, and family. Check with parents, aunts and uncles brothers sisters and cousins, ask about family members and if others have similar features to yourself. It is likely that you may have KS, but if your family and extendied family knows of other peolple within they may know exactly what you have allready and that is a better place to start from.
Finally I will say again, talk to a doctor, they really are the only people who will ever be able to specifically identify whether you are infact XXY or have another condition.

[krisalyx]

well i'm the only one in my family like this sigh i hate to re-explain everything but here goes, ok i was born in the early to mid 70's just before i was born (not sure when exactly ) my mom was given a medicine called debendox and it well for lack of a beter term changed me well two things one it made my legs go stiff at 6 months old and years later i started sprouting breasts this was a few years back now either i didn't notice or what basically i have a tomboyish face bigish c cup breasts big hips a big ass and yes i still have my male parts but there so small hell when my cock shrinks i can play with it like i have a clit and if that's not a sign that somethings really screwy with me i don't know what is, but as far as i know i'm the only one in my familly with this problem (sigh) honestly i just want to be treated as a girl (smiles) and not a boy

[petra]

ok now this is a bit of a tough question i'd done some basic research and yes i believe i do have klinefelters but and odd question has popped up does it cause wide hips in boys effected by it and could it cause stifness in limbs from say birth to 5 years old?

No amount of 'basic research' will allow you to make a self diagnosis. You can "believe" all/what you want, but the only way to KNOW is for a doctor to do a karyotype on you. "Wide hips" do not necessarily indicate KS; only that you found a syndrome that fits your symptom. Are you developing breasts? Are your testes small or immature? Are you sterile? Oops, you need a doctor for that info.

Seems you are trying to find free corroboration of your "research" from non-medical people. Not getting tested only increases your anxiety; and that is not good.

[Kailana]

hiya petra,
good point on the doctor is the only one who is going to be able to tell you anything.

Just wanted to remind people or second your statement. No one here can actually tell another person or diagnose another person with anything or as having any specific condition and while some members think they can spot the intersex wannabee's with some degree of skill, not even they can say whether or not someone is or is not actually intersexed.

Only extensive genetic testing will provide an answer and often doctors won't even bother to try to find an answer unless you are in a serious life threatening state of being. For anyone else who seems to be ok, they tend to think its not really worth looking for an answer and sometimes doctor's when they actualy do have answers will continue to withhold information to keep people from finding out that they do indeed have an intersex conditon and for some people multiple conditons.

[petra]

Kailana,

All I was trying to say was that I hoped Krysalyx was not falling into the position of a first year med student. Many such students become positive they have all the symptoms of many/most of the diseases studied. Wide hips and breast development does not necessarily mean one has some form of KS.

For myself, back on testosterone treatment, fat in hips have moved around to fat in belly (supposedly easier to lose HA!). I know I am XXY because I have the karyotype to prove it. Without testing, any other advice is wasted; might even do more harm, or not.

[uncle festa]

ok now this is a bit of a tough question i'd done some basic research and yes i believe i do have klinefelters but and odd question has popped up does it cause wide hips in boys effected by it and could it cause stifness in limbs from say birth to 5 years old?

It's possible for XXY's to have widened hips over that of an XY male, as for stiff limbs or joints that could have any number reasons, completely unrelated to XXY.

Most XXY's don't know they are were any different from anyone else before their diagnosis and many people go through their entire life never finding out they are XXY.

What research has brought you to the conclusion that you think you are XXY?

Matthew.

[Halifax]

ok now this is a bit of a tough question i'd done some basic research and yes i believe i do have klinefelters but and odd question has popped up does it cause wide hips in boys effected by it and could it cause stifness in limbs from say birth to 5 years old?

When is your appointment to see a Dr? I don't need to know exactly but that's got to be your first step if you think you have this disease.

[tommsg]

ok now this is a bit of a tough question i'd done some basic research and yes i believe i do have klinefelters but and odd question has popped up does it cause wide hips in boys effected by it and could it cause stifness in limbs from say birth to 5 years old?
Was the medicine given to your mother a xeno-estrogen, something similar to or the same as diethylstilbesterol? There's a chance that she got such a drug and it could cause some feminizing add-ons to a xxy or other variation.
There are probably intersex conditions that do not easily pop up on the current list of medically recognized ones but it would be good to get a karyotype to see if your are a genetic variant. The test is not cheap and you will need a prescribing physician to order it. Check to make sure you're insurance will cover it. We were pretty shocked when we got the bill $1600 in 2005.
Love Tom/Ms.G

[CC]

How delightful to see you both here,clearly it was the snow leopard that guided you in ;-)

[mrp5760]

Way too many opinions here, simple blood test, will tell if you are 1x 2x or more.
My major symptoms didnt appear until I was 37 years old and under tremendous stress.

I am 2x, and now take 5 mg of testosterone daily, and it changed my whole Life
makes me a better person. Not afraid of being Honest with others.

Way too many out spoken Geniuses here, not enough compassion, frankly I am ashamed of some of you.

[Aseras]

Of course genetics are not everything too. You are whomever you are. Don't go looking for excuses or reasons. Get some answers, get the help you need and live your life and be happy nothing worse is wrong with you and you'll be way ahead of the average sheeple out there.

[CC]

that's got to be your first step if you think you have this disease.
:umno:

I'll have you know that XXY is not a disease,aneuploidy perhaps, but definitely not a disease

[CC]

Way too many out spoken Geniuses here, not enough compassion, frankly I am ashamed of some of you.
......in between shots are we :smash:

[tommsg]

Are your arms and legs the same length?
Are your testes about the size of kidney beans or smaller?
Do you have light secondary body hair?
Get a buccal test - (the one they're always doing on TV CSI shows) this will indicate whether you have a chromosome anomaly. It won't say which one.

Are you emotionally and/or kinesthetically intelligent but less quick on the draw with math and book learning? How about spatial relations and/or music? How imaginative are you? Do you get along socially better with women than men but you pass easily as a man? Do you feel like a two spirit, a man and a woman? Do you consider yourself highly empathic?

These are some of the characteristics of xxy folk. Some of us have a lot of these and some don't have any. While we agree that a Karyotype is the most definitive answer - it's worth noting that most of these tests are done with blood and if the test is positive you may still have a different karyotype in your organs or skin. Furthermore, karyotyping is expensive. It cost us $1600 to have the test done since it was not covered by our insurance.

If the test is positive - be sure to require a full endocrine panel of tests - enzymes, thyroid, pituitary, adrenals, estrogen, testosterone, cortisol, estradiols etc. before starting any hormone therapy. Most of the so-called therapies (esp. large doses of testosterone) may not be beneficial, and may be very bad for you. Once started they are difficult to stop. From an xxy with DES

[galens47]

karyotype to see if your are a genetic variant. The test is not cheap and you will need a prescribing physician to order it. Check to make sure you're insurance will cover it. We were pretty shocked when we got the bill $1600 in 2005.
Love Tom/Ms.G

Greetings,

You could join a study, send me a PM and I will put you in touch with one happening now. We wont get our results for a while, but it is done...

If you have medical ins you can request from your primary a referral to geneticist and then from that person a karyotype can be requested. It is likely you will be challenged at each step. Sounds like you have your story worked out so far, I'd say go for it.

As to the penis behaving like a clitoris I have a similar experience. Urinating is thrilling...

Tom/MsG and others are correct we are all variants of human and science has only just begun to compare DNAs. There are many variants and many twists and turns as we live it and experience it.

Cheers,

Galens47

[DavidXXY]

ok now this is a bit of a tough question i'd done some basic research and yes i believe i do have klinefelters but and odd question has popped up does it cause wide hips in boys effected by it and could it cause stifness in limbs from say birth to 5 years old?

People with XXY nearly always have very small testes after the age of puberty. How small is small? Like a lima bean or a peanut. They definately will not fill out the scrotum as a normal post-pubertal XY male does.

If you are well past the age of puberty and that describes you then a karyotype is in order. This is a genetic test. In the US it costs around $400. If you don't have insurance, it is possible to skip the cost of the doctor's office visit and go directly to the testing lab yourself but it's still going to cost you around that much. You have to get the blood drawn someplace and have it sent in.

On the other hand, if you have normal adult testes (which you would know by looking at other guys in the locker room) then likely a karyotype is going to be a waste of money.

David

[DavidXXY]

If you have medical ins you can request from your primary a referral to geneticist and then from that person a karyotype can be requested. It is likely you will be challenged at each step. Sounds like you have your story worked out so far, I'd say go for it.

Galens, in the US anyway it isn't necessary to go through a doctor to get the genetic test unless you need insurance to pay for it. I know several people who have gone direct to the lab. Trouble is finding one. There are a lot of scams on the internet. I would call a geneticist and ask who they use.

If you need insurance to pay for it, then you may well have to put up with a lot of static from a doctor. Docs have a strong bias against wasting the insurance company's money. If the doc doesn't think the test is warranted he is going to be an obstacle. But he can still be gotten around by calm insistence, and the patient tell the doc he (the patient) is willing to pay the expense if the insurance won't cover it. Which he might have to do.

If this is about XXY and the patient has the tiny testes, then that really is all the patient has to focus on. If he has normal XY adult testes, well, in my opinion he is probably barking up the wrong tree and the doc is going to see it that way too.

[DavidXXY]

I should note - the $400 I quoted is from someone on XXYTalk who went direct to a lab in Niagara Falls. His girlfriend worked there so he got it done for what a doc would pay.

I've never had a karyotype but a screwy endo tried to talk me into it about 10 years ago. He had a pet theory I must be a mosaic because he had heard that all XXYs are retarded and I obviously wasn't. Insurance wouldn't pay because I was in my 40s and already had a diagnosis going back 20 years previous, there was no medically valid reason to get a karyotype. This guy tried to convince me to pay for it out of my pocket. At that time, in 1999, it was going to cost $800 and that was going through the clinic. So Tom's report of $1600 in 2005 is just outrageous. I suspect the doc used him to make a payment on the yacht.

I concur with Tom's suggestions about testo treatment. Start slow and work up. Some docs think we're girly men and we need a whopping overdose of testo to make real men out of us. I have heard that story again and again. Too much testo will make anybody miserable. The good news is the effects shouldn't be permanent if you don't take it too long. Don't let a doc bully you into overdosing. If you don't like it, quit using it.

[galens47]

Hello,

I went the medical way and I am glad I did. I can run around docs in the language dept, they're only answer is a blank stare or acting defensively.

On that point writing of this post gave me the answer to a letter I've been trying to write for a week. To "my" geneticist.

See what you think:

Dear Mark,

It was very clear to me when we met that you had not done your homework prior to meeting me. Any person who quote medline or the other item you gave me are part of the system that fucked me up. I gave you a chance to help out and you met me with questions that I have answers to and you would to if you had done your homework.

I am not interested in going back to elementary school with Klinefelter knowledge. If you are interested in working with me please take the time to catch up. Otherwise its time for retirement as you are not helping the other potential KS children and families in your panel.

Start at ISNA.org I know you know how to research you cant get to where you are without that skill.

I'm here if you hit a stumbling block, but other than that I will work with Ms Okenfuss who did her homework. Or the host of other geneticists who will jump at the science I am offering.

Thanks,

Galen


This is how I fire a doctor.

Cheers,

Galen

[DavidXXY]

I fire a doctor by not going back. The problem with antagonizing them is that stuff ends up in your records, you get labeled as a malcontent and a nut, and sometimes your records can follow you and make trouble.

Before I fire a doctor I try to educate him. Doctors are just human like the rest of us. His education may not have covered this topic - that's not his fault. He has biases just like anybody else and maybe he feels squeamish about intersex.

The real question: is he teachable, does he listen to his patients? A good doctor will recognize that patients with an unusual condition often become expert on it and know more than most doctors. Or is he defensive about how much he really doesn't know? Docs who look down their nose or get hostile at suggestions are docs I want nothing to do with.