You absolutely should be tested but not by a doctor in your Health Plan. You do not and I repeat you do not want it noted in any form that you have any suspicion of or been tested for MD.

My advice is to go outside and find out. If possible use a phoney name...any name but mine.

As with myself, you want to know so you understand waht is happening to you and you can prepare and adjust accordingly.

As we look through the list of illnesses people come down with you will have to agree we are more fortunate having MD than some other more disabilitating ones.

"I cried because I had no shoes until I met a man that had no feet"

I know this is really really long after this question has been posted, but I'm just curious...why is it so bad to have it noted that you've been tested for MD? I'm 17 years old and had an "abnormal muscle biopsy" of my paraspinal muscles and it indicated muscular dystrophy, so I had to go to a neuromuscular clinic to be tested. Turns out I don't have it, as the biopsy was screwed up (possibly because of where the biopsy was taken from, because it was during my scoliosis surgery and my muscles were definitely a bit messed up from the scoliosis itself). Anyway, I have no idea if the fact that I was tested for it is on my record, but even if it is, why is that bad if you don't have it anyway?

Ever hear of the phrase "preexisting condition"? if not read the fine print in any health insurance doctment

Can they really put that as a pre-existing condition even if it was proven that you don't have it?? Will that permanently be on my health record? That doesn't seem fair, of course when is life ever. Anyway, thanks for answering that. I wasn't sure since it's been several months.

Also, the pathologist (who screwed up my biopsy)also screwed up with my report and wrote that I have cardiac myopathy, which I do not. Can his mistake also haunt me?

I have been told by my doctor that once something is written in your health record, even if it is suspect, it takes an act of congress to get it removed. While it is early i would argue and fight to have it removed as it will most certainly be borught up in your future.

Example: While in the hospital my blood suger was elivated. Some intern wrote that I was diabetic. Now everytime I visit a doctor their first comment is 'I see you are a diabetic' and please take off your shoes and socks.

Ah Hokie,
You and I are in the same shoes. However, I'm at the age were it tends to kick in, and I've yet to be tested. I choose not to. Believe you have to make your own choice, but if it's disturbing your sleep, that's not healthy. What will you do if you find your are positive? I struggled for many years with this, and frankly, it really didn't matter either way except for medical coverage. Thus, the only thing you can do is prepare finacially for your future. AS far as medical, what you don;t know doesn't hurt you, but what they know you know does. Have you considered anonymous test? I'm sure it is possible,

Good luck, and let us know if you do test. Please, share your thoughts.
Kindly,
Terri

hey hokie im 37 and was dx in 1999 but ive had LG all of my life my LG messes with my heart lungs arms frist then my legs i played very hard when i was yonger ive got 3 boys i know that 1 of then have LG i push him to do anything he wants to do in a good way he playes very hard also we dont use the I CANT anywas bach 2 u you mit alone have 1 part of the LG gene my dont have LG my real dad dont have LG but 2gether ive got LG so dont be scard go on do what u need 2 do keep PLAYING HARD 187kicker357