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BeckerMD Forums |
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Subject :going next week.....
2008-04-08 12:25:53
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| tatoodsnakechrmr |
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| Newbie |
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Joined: 2008-04-08 12:08:25
Posts: 2
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to anybody out there...i have an appointment with a genetic couselor next week to finally find out if im a carrier. when i made the appointment months ago it seemed so far away. now that its here my anxiety level is through the roof! just wanted to talk to some people who know about this kind of life. ive grown up around it. ive always known i would have to be tested before i decided to have children. now that its here...wow...panic.
more later...heather |
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Subject :..
2008-04-08 13:46:47
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| kgoodfellow |
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| All Star |
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Joined: 2007-02-20 17:21:41
Posts: 679
Location: Denver |
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Must be quite mind boggling and distressing.
I would try and focus on the fact that knowing or not knowing doesn't change what reality is. You will still be the same you after the test, no matter what the results. |
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K. Goodfellow |
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Subject :..
2008-04-08 21:29:12
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| Roxanne |
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| All Star |
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Joined: 2007-04-13 22:09:01
Posts: 370
Location: Canada |
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I second that Kevin, For me getting tested after Nicholas' diagnosis wasn't a big thing for me. I thought, well if i'm a carrier it's not going to change the fact that Nicholas has this disease. It didn't matter to me either way. I don't blame myself for Nicholas disease; because I didn't know I was a carrier. Heather, take a deep breath and just think, this will not change you; you will be the same person after the test as you were before, but after knowing you will have power and knowledge; that's a good thing :) |
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Roxanne Mom to Nicholas (10) with BMD |
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Subject :Just got tested..
2008-04-09 01:51:06
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| Evans' Mother |
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| Experienced |
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Joined: 2008-03-26 04:43:09
Posts: 37
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Hi I just got tested yesterday. I guess it takes 3 weeks to get the results. I am hoping I am not a carrier. |
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Subject :..
2008-04-09 02:31:58
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| Roxanne |
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| All Star |
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Joined: 2007-04-13 22:09:01
Posts: 370
Location: Canada |
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Hi Evan's mom, I hope your not a carrier either. It wasn't a big deal for me but for someone else it may be a very big deal. If I had known before children, then yes it would have been a big deal; but since i'm not having any more children then it really didn't matter either way. I just want to tell you that it's most likely are you are a carrier as this is the case in about 70%. |
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Roxanne Mom to Nicholas (10) with BMD |
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Subject :..
2008-04-09 10:12:59
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| Meisa |
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| Experienced |
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Joined: 2007-11-14 11:37:47
Posts: 39
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I just found out about 4 weeks ago that I am a carrier. Deep down I knew I would be after Jordan's diagnosis in Oct. but it was still hard to hear it. Knowledge is power for sure and now that I know I am going to a cardiologist for a check up. I need to take care of myself to be there for Jordan and support him through all of this.
He seems to be doing a lot better knowing I have the same deletion as him and he actually called us 'twins'. He says "you have it and you're fine mom". That comment almost had me break down but I stayed strong, for him and as hard as it was, smiled. I don't have the heart to tell him that is probably not the case for him as he only has one X and it unfortunately is not the one I wanted to pass on genetically. We are taking things day-by-day and do our best to believe that something could come out of all the research soon.
Evan's mom: Please don't feel guilty if the results are not what you want to hear. None of us would have passed this on had we known in advance...but that just isn't the way things work out...unfortunately.
Meisa (Jordan's mom) |
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Subject :..
2008-04-09 21:23:23
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| Roxanne |
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| All Star |
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Joined: 2007-04-13 22:09:01
Posts: 370
Location: Canada |
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Hi Meisa, after it was confirmed I too was a carrier I had an EKG & an echocardiogram completed; both these tests turned out fine. These tests will need to be done now every few years to make sure there are no changes. I yet have to go for a lung function test; this will be done in May. I really think that will be fine too as I'm currently having no problems. Knowledge is power and none of us mom's would have passed this on to our children so don't blame yourself. It's like blaming yourself for his hair color or the color of his eyes. |
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Roxanne Mom to Nicholas (10) with BMD |
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Subject :..
2008-04-10 08:06:14
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| tatoodsnakechrmr |
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| Newbie |
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Joined: 2008-04-08 12:08:25
Posts: 2
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thanks for all the support and good advice.
and good luck to you evans mom! i ll be there with you soon! |
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Subject :JUST GOT RESULTS..
2008-07-15 05:35:11
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| Evans' Mother |
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| Experienced |
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Joined: 2008-03-26 04:43:09
Posts: 37
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I just got my results saying I am not a carrier. However my cpk is over 5000. I need to have another genetic test.
I was relieved to hear I wasn't and now anxious all over again that I have to wait another month to confirm the results. |
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