DESPERATE FOR INSIGHT!!!!!!

makahfili

New member
sorry to keep pestering but why do you think the gastroenterologist is not telling me that what they found was in fact 2 mutations then? Because she made it sound that it could be something different. But I too was under the assumption it was SPECIFICALLY for CF. Is it for legal purposes?
 

makahfili

New member
sorry to keep pestering but why do you think the gastroenterologist is not telling me that what they found was in fact 2 mutations then? Because she made it sound that it could be something different. But I too was under the assumption it was SPECIFICALLY for CF. Is it for legal purposes?
 

makahfili

New member
sorry to keep pestering but why do you think the gastroenterologist is not telling me that what they found was in fact 2 mutations then? Because she made it sound that it could be something different. But I too was under the assumption it was SPECIFICALLY for CF. Is it for legal purposes?
 

makahfili

New member
sorry to keep pestering but why do you think the gastroenterologist is not telling me that what they found was in fact 2 mutations then? Because she made it sound that it could be something different. But I too was under the assumption it was SPECIFICALLY for CF. Is it for legal purposes?
 

makahfili

New member
sorry to keep pestering but why do you think the gastroenterologist is not telling me that what they found was in fact 2 mutations then? Because she made it sound that it could be something different. But I too was under the assumption it was SPECIFICALLY for CF. Is it for legal purposes?
 

hmw

New member
I am not sure why the gi doctor is acting like this... although <b>if it was the nurse, sometimes nurses are not legally allowed to divulge test results over the phone</b>, so yes, there could be a problem there if she talked to you. And so the dr could be hiding behind that and passing the buck by waiting to let the cf dr do the talking. I think that is pretty heartless, personally, by making you wait. <img src="i/expressions/face-icon-small-frown.gif" border="0"> You DO have the right to ask for a copy of the actual lab report from the panel test that was done and the names of the 'abnormalities' (aka mutations) that were found will be listed on this report, and we can help you out in identifying them while you wait to hear more. We aren't medical experts here but others might have the same ones and be able to offer some insight on them.

Re. the panel: this test is very specific. It can't tell you about any condition that it isn't 'looking' for... so a 97 mutation test is looking for 97 mutations of the cystic fibrosis gene; not of any other condition, genetic or otherwise.
 

hmw

New member
I am not sure why the gi doctor is acting like this... although <b>if it was the nurse, sometimes nurses are not legally allowed to divulge test results over the phone</b>, so yes, there could be a problem there if she talked to you. And so the dr could be hiding behind that and passing the buck by waiting to let the cf dr do the talking. I think that is pretty heartless, personally, by making you wait. <img src="i/expressions/face-icon-small-frown.gif" border="0"> You DO have the right to ask for a copy of the actual lab report from the panel test that was done and the names of the 'abnormalities' (aka mutations) that were found will be listed on this report, and we can help you out in identifying them while you wait to hear more. We aren't medical experts here but others might have the same ones and be able to offer some insight on them.

Re. the panel: this test is very specific. It can't tell you about any condition that it isn't 'looking' for... so a 97 mutation test is looking for 97 mutations of the cystic fibrosis gene; not of any other condition, genetic or otherwise.
 

hmw

New member
I am not sure why the gi doctor is acting like this... although <b>if it was the nurse, sometimes nurses are not legally allowed to divulge test results over the phone</b>, so yes, there could be a problem there if she talked to you. And so the dr could be hiding behind that and passing the buck by waiting to let the cf dr do the talking. I think that is pretty heartless, personally, by making you wait. <img src="i/expressions/face-icon-small-frown.gif" border="0"> You DO have the right to ask for a copy of the actual lab report from the panel test that was done and the names of the 'abnormalities' (aka mutations) that were found will be listed on this report, and we can help you out in identifying them while you wait to hear more. We aren't medical experts here but others might have the same ones and be able to offer some insight on them.

Re. the panel: this test is very specific. It can't tell you about any condition that it isn't 'looking' for... so a 97 mutation test is looking for 97 mutations of the cystic fibrosis gene; not of any other condition, genetic or otherwise.
 

hmw

New member
I am not sure why the gi doctor is acting like this... although <b>if it was the nurse, sometimes nurses are not legally allowed to divulge test results over the phone</b>, so yes, there could be a problem there if she talked to you. And so the dr could be hiding behind that and passing the buck by waiting to let the cf dr do the talking. I think that is pretty heartless, personally, by making you wait. <img src="i/expressions/face-icon-small-frown.gif" border="0"> You DO have the right to ask for a copy of the actual lab report from the panel test that was done and the names of the 'abnormalities' (aka mutations) that were found will be listed on this report, and we can help you out in identifying them while you wait to hear more. We aren't medical experts here but others might have the same ones and be able to offer some insight on them.

Re. the panel: this test is very specific. It can't tell you about any condition that it isn't 'looking' for... so a 97 mutation test is looking for 97 mutations of the cystic fibrosis gene; not of any other condition, genetic or otherwise.
 

hmw

New member
I am not sure why the gi doctor is acting like this... although <b>if it was the nurse, sometimes nurses are not legally allowed to divulge test results over the phone</b>, so yes, there could be a problem there if she talked to you. And so the dr could be hiding behind that and passing the buck by waiting to let the cf dr do the talking. I think that is pretty heartless, personally, by making you wait. <img src="i/expressions/face-icon-small-frown.gif" border="0"> You DO have the right to ask for a copy of the actual lab report from the panel test that was done and the names of the 'abnormalities' (aka mutations) that were found will be listed on this report, and we can help you out in identifying them while you wait to hear more. We aren't medical experts here but others might have the same ones and be able to offer some insight on them.
<br />
<br />Re. the panel: this test is very specific. It can't tell you about any condition that it isn't 'looking' for... so a 97 mutation test is looking for 97 mutations of the cystic fibrosis gene; not of any other condition, genetic or otherwise.
 

makahfili

New member
Thanks so much you guys!I will for sure request the report on Monday. I am sure they are tired of hearing from me, but I really am tired of waiting. FYI it was the nurse over the phone... <img src="i/expressions/face-icon-small-sad.gif" border="0">
 

makahfili

New member
Thanks so much you guys!I will for sure request the report on Monday. I am sure they are tired of hearing from me, but I really am tired of waiting. FYI it was the nurse over the phone... <img src="i/expressions/face-icon-small-sad.gif" border="0">
 

makahfili

New member
Thanks so much you guys!I will for sure request the report on Monday. I am sure they are tired of hearing from me, but I really am tired of waiting. FYI it was the nurse over the phone... <img src="i/expressions/face-icon-small-sad.gif" border="0">
 

makahfili

New member
Thanks so much you guys!I will for sure request the report on Monday. I am sure they are tired of hearing from me, but I really am tired of waiting. FYI it was the nurse over the phone... <img src="i/expressions/face-icon-small-sad.gif" border="0">
 

makahfili

New member
Thanks so much you guys!I will for sure request the report on Monday. I am sure they are tired of hearing from me, but I really am tired of waiting. FYI it was the nurse over the phone... <img src="i/expressions/face-icon-small-sad.gif" border="0">
 

carrierae21

New member
You can go to the medical records department first thing in the morning and they should be able to print out EVERYTHING right then and there! Sometimes you do have to pay so you might want to specify just labs if you think it'll be expensive, but it's funny to read what the docs and everyone else says about you. Our social worker wrote "Mother was very tearful at time" @ our first appointment... Duh?!?!?!?! Was anyone not tearful @ their first appointment?? lol, I'm pretty sure I was still having a little post-partum depression. Plus, we were a little blown away since the newborn screening came back negative for CF.
 

carrierae21

New member
You can go to the medical records department first thing in the morning and they should be able to print out EVERYTHING right then and there! Sometimes you do have to pay so you might want to specify just labs if you think it'll be expensive, but it's funny to read what the docs and everyone else says about you. Our social worker wrote "Mother was very tearful at time" @ our first appointment... Duh?!?!?!?! Was anyone not tearful @ their first appointment?? lol, I'm pretty sure I was still having a little post-partum depression. Plus, we were a little blown away since the newborn screening came back negative for CF.
 

carrierae21

New member
You can go to the medical records department first thing in the morning and they should be able to print out EVERYTHING right then and there! Sometimes you do have to pay so you might want to specify just labs if you think it'll be expensive, but it's funny to read what the docs and everyone else says about you. Our social worker wrote "Mother was very tearful at time" @ our first appointment... Duh?!?!?!?! Was anyone not tearful @ their first appointment?? lol, I'm pretty sure I was still having a little post-partum depression. Plus, we were a little blown away since the newborn screening came back negative for CF.
 

carrierae21

New member
You can go to the medical records department first thing in the morning and they should be able to print out EVERYTHING right then and there! Sometimes you do have to pay so you might want to specify just labs if you think it'll be expensive, but it's funny to read what the docs and everyone else says about you. Our social worker wrote "Mother was very tearful at time" @ our first appointment... Duh?!?!?!?! Was anyone not tearful @ their first appointment?? lol, I'm pretty sure I was still having a little post-partum depression. Plus, we were a little blown away since the newborn screening came back negative for CF.
 

carrierae21

New member
You can go to the medical records department first thing in the morning and they should be able to print out EVERYTHING right then and there! Sometimes you do have to pay so you might want to specify just labs if you think it'll be expensive, but it's funny to read what the docs and everyone else says about you. Our social worker wrote "Mother was very tearful at time" @ our first appointment... Duh?!?!?!?! Was anyone not tearful @ their first appointment?? lol, I'm pretty sure I was still having a little post-partum depression. Plus, we were a little blown away since the newborn screening came back negative for CF.
 
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