Dont know what to believe.

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ALivingMiracle

New member
When i was two years old, i was diagnosed with CF by Doctor Stewart Adair, And after that i was diagnosed again, by Dr. Green. I am 16 years old, and was just hospitalised for a week, with pnamonia and fluid on my lungs. But now all of a sudden they are saying that i do not have CF. But when i was two, everything was there. I have all the inner cimptoms but none of the outer apperiane, except that i am pale and very small. I do not have clubbed fingers, but my skin does taste like salt. Im so confused and hurt. I have put up with the teasing because of the way i had to take meds at school. I have been harrassed for missing too much school, and gone through very tough times, for a doctor to tell me that i do not have this illness. 18 years ago my brother Adam passed away, we were told it was CF. But if i dont have it, then maybe he didnt have it, and im starting to wonder, if he didnt pass of CF, what did he pass of? Im so confused, i dont know who to believe, the first doctors or this one. The first doctors did all the tests, and it came back positive that i have CF, and now these new doctors did the same tests and they came back negitive. Im so confused, what should i do? My moms upset, my dads upset, im hurt, i dont know where to turn.

Jacky
16 years old
 
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ALivingMiracle

New member
When i was two years old, i was diagnosed with CF by Doctor Stewart Adair, And after that i was diagnosed again, by Dr. Green. I am 16 years old, and was just hospitalised for a week, with pnamonia and fluid on my lungs. But now all of a sudden they are saying that i do not have CF. But when i was two, everything was there. I have all the inner cimptoms but none of the outer apperiane, except that i am pale and very small. I do not have clubbed fingers, but my skin does taste like salt. Im so confused and hurt. I have put up with the teasing because of the way i had to take meds at school. I have been harrassed for missing too much school, and gone through very tough times, for a doctor to tell me that i do not have this illness. 18 years ago my brother Adam passed away, we were told it was CF. But if i dont have it, then maybe he didnt have it, and im starting to wonder, if he didnt pass of CF, what did he pass of? Im so confused, i dont know who to believe, the first doctors or this one. The first doctors did all the tests, and it came back positive that i have CF, and now these new doctors did the same tests and they came back negitive. Im so confused, what should i do? My moms upset, my dads upset, im hurt, i dont know where to turn.

Jacky
16 years old
 
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thelizardqueen

New member
I was diagnosed at 6 weeks of age, and then 10 years later the docs didn't think I had CF because I didn't look like a CF person, my lung fucntions were perfect, etc. They did another sweat test on me, and I did have CF. Get your doc to do a sweat test on you. That is how you will find out for sure. If two docs diagnosed you as CF, and one didn't - you would think majority wins. Just because you don't show "outward" signs, does not mean you do not have CF. I do not have clubbed fingers either, I don't cough at all when I'm not sick etc. You could very easily have very mild form of it. Do you take enzymes to digest your food?
 
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thelizardqueen

New member
I was diagnosed at 6 weeks of age, and then 10 years later the docs didn't think I had CF because I didn't look like a CF person, my lung fucntions were perfect, etc. They did another sweat test on me, and I did have CF. Get your doc to do a sweat test on you. That is how you will find out for sure. If two docs diagnosed you as CF, and one didn't - you would think majority wins. Just because you don't show "outward" signs, does not mean you do not have CF. I do not have clubbed fingers either, I don't cough at all when I'm not sick etc. You could very easily have very mild form of it. Do you take enzymes to digest your food?
 
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anonymous

New member
hi
i'm doing a school project on cf becasue i had an uncle who had it and i am now a carrier. i was wondering if there was anything that you want kids to know about cf?
and i hope that you feel better!!!<img src="i/expressions/heart.gif" border="0">
 
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anonymous

New member
hi
i'm doing a school project on cf becasue i had an uncle who had it and i am now a carrier. i was wondering if there was anything that you want kids to know about cf?
and i hope that you feel better!!!<img src="i/expressions/heart.gif" border="0">
 
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ALivingMiracle

New member
Thankyou all. I have had the sweat tests done. When i was two they did a sweat test, thats how they determined that i had it. But now all of a sudden those tests are coming back negitive. I take, enzymes, nebulizers, the vest, albuteral inhalors. I just dont see how the tests from 14 years ago could be different then ones from now.
 
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ALivingMiracle

New member
Thankyou all. I have had the sweat tests done. When i was two they did a sweat test, thats how they determined that i had it. But now all of a sudden those tests are coming back negitive. I take, enzymes, nebulizers, the vest, albuteral inhalors. I just dont see how the tests from 14 years ago could be different then ones from now.
 
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Emily65Roses

New member
Let me give you a piece of information that I've heard here before:
You CAN get a false <b>negative</b> for CF.
You CANNOT get a false <b>positive</b> for CF.

In other words, if you've had a positive sweat test, just because it's false now doesn't mean anything. If you had a positive CF sweat test done as a child, you are indeed a CFer regardless of how you look or how your health is. A lot of us look and act pretty healthy a lot longer than docs think we will. They just don't know any better. Are you going to a CF center, or just some doctor? If you're not going to an accredited CF center, I suggest you find one, because they'll be a lot more knowledgable than your current doc seems. You can find a CF center near you with this link:
<a target=new class=ftalternatingbarlinklarge href="http://www.cff.org/chapters_and_care_centers/">http://www.cff.org/chapters_and_care_centers/</a>
 
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Emily65Roses

New member
Let me give you a piece of information that I've heard here before:
You CAN get a false <b>negative</b> for CF.
You CANNOT get a false <b>positive</b> for CF.

In other words, if you've had a positive sweat test, just because it's false now doesn't mean anything. If you had a positive CF sweat test done as a child, you are indeed a CFer regardless of how you look or how your health is. A lot of us look and act pretty healthy a lot longer than docs think we will. They just don't know any better. Are you going to a CF center, or just some doctor? If you're not going to an accredited CF center, I suggest you find one, because they'll be a lot more knowledgable than your current doc seems. You can find a CF center near you with this link:
<a target=new class=ftalternatingbarlinklarge href="http://www.cff.org/chapters_and_care_centers/">http://www.cff.org/chapters_and_care_centers/</a>
 
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thelizardqueen

New member
Like I said - 2 doctors diagnosed you as CF, one did not. I'd go with the first two. You can't possibly get two positives, and then suddenly have CF dissapear and have a negative test. I would imagine because you've had CF this long, that you would be going to a CF specialist right? If not, you should be getting yourself one. Doctors who do not deal with CF on a regular consistant basis cannot do for you, what a specialist can.
 
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thelizardqueen

New member
Like I said - 2 doctors diagnosed you as CF, one did not. I'd go with the first two. You can't possibly get two positives, and then suddenly have CF dissapear and have a negative test. I would imagine because you've had CF this long, that you would be going to a CF specialist right? If not, you should be getting yourself one. Doctors who do not deal with CF on a regular consistant basis cannot do for you, what a specialist can.
 
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