I used to think I was daft, but I'm not so sure now.

[notodd]

Isn't it a problem with xxy's?

Aren't we supposed to have learning difficulties, bad memory, etc. etc.

Having just been to the local surgery for my latest round of blood letting, I was confronted with a nurse, who after reading the doctors notes several times, turned to me and asked me to explain what the tests were for.

So I did. But she still didn't get it. So eventually I had to tell her what to write, so that we got the right results. Confused, yes she probably is! :doh:

I didn't think I was as rare as that.

(Off to BBC7 now, so I can listen to something whilst doing my household drudge).

[JOS]

I had to go to the testicular cancer "clinic" again today, so all the men waiting always look at me a bit funny when I get called up to go in.

But it really confuses the nurses whan they take my bloods... they always have to go off and huddle to make sure they're putting my blood in the right coloured tubes. And I've had to explain sooooo many times to, essentially, random strangers.

One time, a really hostile locum GP was really funny about filling my prescription asking me if I was I wanting oestrogen because I'd been abusing steroids... because she would not condone that!!! She had my notes open in front of her!

It just really confuses people I think
Have you had the "receptionist checking you haven't made a mistake" thing happen yet? That ones always a laugh in a crowded waiting room.
love it!

[notodd]

Yes! And worse. I've got osteoporosis. I bet you can see me sitting in the queue, surrounded by old ladies, all looking at me as if I'm in the wrong place, but not able to say anything.

The surgery phoned me at 6.00pm tonight to tell me that I have to go and do more tests tomorrow, 'cause they messed up and now need a special form to accompany the bloods. Think I'll change my name to 'Pin Cushon' instead. :rolleye11 So that's, Nurse Hilda, Nurse Madaline, Nurse Debby and Sister Plant. Can't be anymore can there?

So what other wonderfull moments have you had?

[JOS]

For a supposed "bad memory" you're pretty good :)

The BEST pin cushion experience (and worst in a way) was when I saw the genetics guy... because he "deals mostly with children" he uses really narrow needles. I had no bruise and he was super quick. (I did feel sad waiting with the other toddlers and parents though)

The a bad one lately was when I went for my last scan
Normally the appointments are just all together with the rest of the hospital but now the cancer centre has it's own scanner.
They've decided to do all the appointments by clinic... so just me and loads of men then.... but this time I was the first appointment.... so there I was sitting in nothing but a flimsy hospital gown and socks with eight other fully clothed men... nice
especially when every time I have a scan the staff are legally obliged to ask me if I'm pregnant and I have to sign to confirm I am not!

but I must admit.... little old ladies are probably going to be the worst... they generally seem to have no qualms about asking you why you're there, at least the men just look :)

[The Female Eunuch]

The most common case like this that I get in medical centres now is having to explain that I'm not refusing to have cervical smear tests because I just dislike them - I can't have a cervical smear test because I don't have a vagina.

And in everyday life, people assume that I don't need to use disabled toilets, because I'm not in a wheelchair, but actually because of the need to set up catheterisation gear I usually do need to use the disabled toilet. And when I refuse certain accommodation because it doesn't have the bathroom facilities I need for catheterisation, people assume I'm just being fussy. It's hard to convince them that it's an actual medical necessity.

cheers,
Caroline

[Aseras]

I have lots of fun at the gynecologists office. My old dr used to be in a group with some other doctors and some GPs' and such so it was easy to blend in. This new doctor just branched off on her own and it's all OB/GYN and women's health care. Lots of fun for a "guy". Only good thing is when I walk in the door or when I call them, they *know* who I am. It's also fun when the staff or whomever is reading your orders in the checkout and they stop, do a double take, read things again and look again. I've seen that a lot. Last time I got that was the MRI order from my endocrinologist.

I've had nurses and the phlembotomist people who draw the blood freak out over orders before. "why are we doing estrogen on a male?" "Why does it say to report female ranges". The best is a religious pharmacist trying to figure out why a guy has a prescription for what amounts to birth control.

I'm a very difficult blood draw too. Last time it was 7 tubes. They could only get 5, after 5-6 sticks and having two other people try. It dribbled out and my blood always clots and hemolyzes in the tubes. I still got a call a few days later that some of the draws were bad and they had to redo them.

I've had both my GP and now the new GYN tell me I need to get a mammogram done. That's gonna be a lot of fun.

[notodd]

[QUOTE=JOS;21380]For a supposed "bad memory" you're pretty good :)

Actually, my memory's not bad at all and I never had a learning problem. (I even went to a grammer school)

The first tablets I took for osteoporosis, (Fosamax) made the remnants of my bits hurt. So, off to the hospital for a full scan of the offending parts. 2 hours later and a lot of fafing around, it was decided that it was a waste of time. Shortly after, I went to the States for three weeks and forgot to take the tablets. The pain stopped. So I never took them again.

Shortly after moving house, I enrolled with a new doctor's surgery and although, like you Jos, he had read my notes, I had to tell him it was time for another bone scan. 'So, what tablets are you taking?'

The rest of his speech is not printable, but suffice it to say he was not happy with me. I'm on a different set of tablets now, with a nice woman doctor. (same surgery).

[JOS]

it's funny how they never seem to make it clear that there are hundreds of different brands and options
and that you can have side effects on one but not another

how often do you have to have bone scans?

[notodd]

I have to have a bone scan every five years for the moment, rising to every two years, as I get older.

[notodd]

In answer to Aseras, I'm just waiting for the Mammogram thing too. I'll be able to go with my wife. That'll be fun.

:embaresse

[Kailana]

thank you all for sharing some interesting experiences.

I am wondering if the CAIS support groups ever mention having to explain to parents that there daughters may experience some of the situations similar to Jos and how to explain what to do when something similar happens?


as too Notodd, unfortunately alot of the information on klinefelters is general information, so while many may have some issues with memory or learning difficulties not all will. I honestly believe that many issues with learning deficits can be greatly reduced by better education and assistance starting earlier in life. I do believe the one on one extra help with reading and writing i had from 3rd grade through 5th grade provided a great deal of additional education and taught me other ways to learn that without I know I would of struggled in school. Basically I believe with proper assistance many early difficulties can be corrected and alternative methods used to help teach people to catch up and learn what they need too. I think it is ashame when similar methods are not available to people when I do know they can make a huge difference.

I sometimes think that our education system is not really tailored to each person.

some people learn best by mimicking ie doing hands on learning.
others by watching and listening and some by reading. I think if there were more classes available for kids to be placed into that provided each with the best teaching method for each person all would end up better educated then with our current system of everyone trying to learn the same thing the same way.

Tailor teaching to each person and all will learn by using the methods each is inately built for.

[fraulein_Maria]

[QUOTE=The Female Eunuch;21381]The most common case like this that I get in medical centres now is having to explain that I'm not refusing to have cervical smear tests because I just dislike them - I can't have a cervical smear test because I don't have a vagina.

>>> what might help because its the truth... just not the WHOLE truth... is to tell them that you don't have a cervix.... many more women lack a cervix than lack an entire vagina (removed because of the cervical cancer that the smear is supposed to detect early)

they don't deserve the whole truth anyway.... pearls before swine. <<<

[notodd]

Sorry about the lateness of the reply, but I had a fun weekend, driving up and down in high winds and torrential rain. (Oh, joy!)

Nice to know that it is NORMAL to get treated like this. In many respects I wish it wasn't. Still, I'm sure they'll learn sometime. I suppose we'll have to keep educating them.

Regards to all, Jon. :push: (Love this one, brings out the Lemming in me!)