My name is Bill, and I was diagnosed in January, 2000 at age 46. My primary care physician had told me in my annual physical in October, 1999 that my testicles were atrophying, especially the right one. (He had told me in a previous physical that my testicles were "remarkably small"). My doctor didn't know what any of this meant, and he also didn't think it was important or anything to worry about.

I disagreed. In fact, I was in a panic. My testicles were already very small, according to my doctor, and now they were shrinking. Would I have any left? What about my penis? Was that next? I had been experiencing sexual difficulties for years - basically, zero desire, and also no desire to have desire. It all seemed like too much bother, but after a while, it became very difficult to masturbate even when I did it at all, which was rare. I either didn't want to get it up, or I couldn't get it up, or if I managed to coax it up after a lot of time and effort, it wouldn't stay up.

When I returned home from my doctor's appointment, I started doing research on the Internet. That is how I learned about Klinefelter syndrome, which seemed to explain so much more about me than shrinking balls and erectile dysfunction. Basically, I diagnosed myself. After contacting someone with Ks who has a very informative website (Stefan Schwarz, and his website is www.klinefeltersyndrome.org), I went back to my doctor in early January, 2000 and asked for a karyotype. My doctor asked why, because it is a very expensive test and he had to get authorization from my HMO for it.

The first thing I did after going back in the house was to subscribe to all the XXY listserves that were available at that time. By the time I had my first appointment with an endocrinologist two months later, my learning curve was pretty advanced. Stefan had recommended his own endocrinologist (Dr. Arturo Rolla of Beth Israel Deaconess Medical Center, Boston, MA) and that's who I've been seeing. Dr. Rolla put me on the Androderm patch at 5 mg, and tried me at two patches a couple of months later. My T levels were out of sight on two patches, so he put me back on one. I started experiencing problems with skin irritation from the patches, and this got rapidly worse. In early August, 2000 I switched to AndroGel 5 gm, and I've been on that ever since.

I am 6'4" and weigh about 185 at present. Ironic that in middle age I should have more lean body mass and muscle than I ever had as a kid or as a young man, but now I know why I was so weak, comparatively, when I was younger. I was also a shy kid with low self esteem, and I've suffered from depression since I was 12 (now on Wellbutrin and Neurontin). I did very well in the classroom, and I was a straight-A student throughout elementary school and graduated 9th in my class in high school. While I did well in the classroom I couldn't stand phys ed, because I was uncoordinated and had no stamina and things like baseball and basketball were hateful chores that I had to endure, not games that I ever enjoyed.

One thing that I noticed, however, was that I had a lot of trouble remembering complex oral instructions. Also, outside the classroom I had a hard time keeping up in conversations. Something would be said, and by the time I had formulated a response, everybody else would be talking about something different. Also, if more than one person was speaking, what they said would cancel each other out. And if there was any kind of background noise, like a radio or stereo, everything became incomprehensible. I could see people's lips moving, but I couldn't hear what they were saying.

It was not until much later in life that I was assessed for learning disabilities, and was diagnosed with Central Auditory Processing Disorder (CAPD). Testosterone has improved my self esteem, not to mention my sex drive, and it does seem to have improved my CAPD, because I have no trouble at my job with conversation and so forth. It's a noisy and complex environment, too. Still, I don't like to go to parties, I never go to bars, and if I very seldom go to restaurants. Maybe out of old habit, not current reality. Hmmm, I should test myself and try some of these things.

To make a long story short, I have a good job that I've held for six years and that I could quite possibly have for life, which is very rare these days, especially in the corporate sector (I work in an investment bank, which has been in business since 1760, so it's no Enron). My salary is decent, I just got a 3% raise and a $2,500 bonus, so finances are looking pretty good, except that I have to give it all away to a mortgage company when I buy a house or condo, which I'm planning to do later this year.

I've never been in a long-term relationship and I'm probably always going to be a bachelor, but who has a lock on the future? I could be in a civil union this time next year, you never know. If you know any single gay men living in the Boston area, send them my way.

Good night for now.

Bill Mulkern

Co-chair, Klinefelter Syndrome Northeast Regional Support Group

Quincy, MA