Need Testing

[shivashakti]

Hi!

I'm 31, raised as male and living in Southern New England.

I'm not going to go into my whole medical history, conditions, and such unless necessary, but I'm intersexed.

I need to get testing to get a full diagnosis. I've never (to my knowledge) been karyotyped. I cannot obtain my surgical records regarding the 'corrective' surgery on my genitals that happened shortly after birth. The hospital I was born in said they don't keep records that long.

I had further surgery as a child when I was about 8 years old. I applied to get my records there (New York Presbyterian Hospital, formerly Columbia-Presbyterian) to no avail.

I just want some answers. The problem is that I don't have the money for a lawyer to lean on the hospital to get my info. I don't have medical insurance to go see an endocrinologist for testing.

Is there anyway I can get testing and a karyotype done for free? I live near a major university (Yale).

I don't want to have to switch jobs just in order to get testing done, but I cannot afford to see an endo without insurance.

Thanks!
Ryan

[kayleighsmom]

I'm sorry about your situation, Ryan. I guess I simply don't understand why hospitals/drs etc won't give out your own medical records? Are they gone? Some legal problems? I don't know. I didn't have any problems getting my med recs and copies of other members of my family, which in retrospect, I don't have any rights to!

I hope you get the answers you are looking for. Hang in there!

Linda

[Priestess]

Hello Shivashakti,
I'm not sure about getting the test itself, for under your circumstances. But if you do get it done, I think you should try to make sure that it's a mouth swab or other actual tissue sample, and not simply a blood test. As far as I can tell, blood tests might not pick up any of the mixed-dna situations like chimerism or mosaicism. So blood dna might be a waste.

[Kailana]

Actually Karyotyping by blood can detect a great many things, however, it also cannot detect a few of the more unique karyotypes. particularly chimerica mosaicism, as that variation involved dna frm different parts of the body not being the same. The product of two zygotes becoming one fetus. a person with the dna of there nondeveloped twin remaning inside different parts of there body. So some tests will say one thing while the more expensive ones that are more accurate and time consuming, will say another.


Tests, which tests, there are so many, and results from one doesnt neccessarily mean all that much. Sometimes you need a large gauntlet of tests and lab draws to figure things out. And even still you can get some unusual results that dont mean that much unless the right test is performed.


Medical records suck, Sometimes you can get things to show up after years of trying. Generally its a lie though. Even though most hospitals will tell you that they dont keep records after 7 years, they usually do. Locked away in storage somewhere. Get your current doctor to request your medical records from all your previous hospitals. I bet you will recieve some of those records, while you may not get much, there will be some. And usually what you do get is, or has been edited. Still you should get something. And yes it will cost a little. $20- $30 or so. And so you will find out that generally your being lied tooo. Should you ever be fortunate enough to get a lawyer then youll be able to get a whole lot more

By the way Its that stupid HIPPA law that causes this crap. Doctors, hospitals and Psyches have the right to deny you any medical information that may cause you trauma. Apaparently the trauma over finding out your intersexed and bear so many scars isn't enough pain and suffering to get treated with honesty and openness. Instead a little more shame and secrecy.

Sorry for any harm i have have caused. I really am not fond of medical politics. or should i say crappy medical ethics.