young adult being tested for cf

[hopesiris]

CF can be missed by many doctors, especially an adult diagnosis of mild CF (CF that progresses more slowly). I think you should go to a CF clinic for a consultation/testing. There is a list of CF clinics on this site. Some people need the Ambry full panel test for 1500 mutations if their mutations are less common. I had it done, the results took 3 weeks and my insurance covered it. Send me a private message if you have any questions. I was just diagnosed this year at age 36.

BTW- yes, not all CFers are skinny. You can be pancreatic sufficient, which is more consistent with milder CF. Many pancreatic sufficient CFers do have some digestive disturbances though.

Bonnie

 

[hopesiris]

CF can be missed by many doctors, especially an adult diagnosis of mild CF (CF that progresses more slowly). I think you should go to a CF clinic for a consultation/testing. There is a list of CF clinics on this site. Some people need the Ambry full panel test for 1500 mutations if their mutations are less common. I had it done, the results took 3 weeks and my insurance covered it. Send me a private message if you have any questions. I was just diagnosed this year at age 36.

BTW- yes, not all CFers are skinny. You can be pancreatic sufficient, which is more consistent with milder CF. Many pancreatic sufficient CFers do have some digestive disturbances though.

Bonnie

 

[hopesiris]

CF can be missed by many doctors, especially an adult diagnosis of mild CF (CF that progresses more slowly). I think you should go to a CF clinic for a consultation/testing. There is a list of CF clinics on this site. Some people need the Ambry full panel test for 1500 mutations if their mutations are less common. I had it done, the results took 3 weeks and my insurance covered it. Send me a private message if you have any questions. I was just diagnosed this year at age 36.

BTW- yes, not all CFers are skinny. You can be pancreatic sufficient, which is more consistent with milder CF. Many pancreatic sufficient CFers do have some digestive disturbances though.

Bonnie

 

[hopesiris]

CF can be missed by many doctors, especially an adult diagnosis of mild CF (CF that progresses more slowly). I think you should go to a CF clinic for a consultation/testing. There is a list of CF clinics on this site. Some people need the Ambry full panel test for 1500 mutations if their mutations are less common. I had it done, the results took 3 weeks and my insurance covered it. Send me a private message if you have any questions. I was just diagnosed this year at age 36.

BTW- yes, not all CFers are skinny. You can be pancreatic sufficient, which is more consistent with milder CF. Many pancreatic sufficient CFers do have some digestive disturbances though.

Bonnie

 

[hopesiris]

CF can be missed by many doctors, especially an adult diagnosis of mild CF (CF that progresses more slowly). I think you should go to a CF clinic for a consultation/testing. There is a list of CF clinics on this site. Some people need the Ambry full panel test for 1500 mutations if their mutations are less common. I had it done, the results took 3 weeks and my insurance covered it. Send me a private message if you have any questions. I was just diagnosed this year at age 36.

BTW- yes, not all CFers are skinny. You can be pancreatic sufficient, which is more consistent with milder CF. Many pancreatic sufficient CFers do have some digestive disturbances though.

Bonnie

 

[Alyssa]

You are on the right track - CF is no longer only a childhood disease. Many people are being diagnosed later in life. My kids were teenagers, others are in the 40's or 50's before a doctor figures it out. Keep looking for answers.

Testing for CF can be confusing and sometimes misleading, as sweat tests are not always clear cut if in the high normal or borderline area, and genetic testing is not thorough if not a complete test (there are currently 1541 genes to test for - often times doctors will start with a screening of less than 100 genes. They then tell the patient they tested negative on the gene test.... this is something you need to watch out for and specifically ask how many genes they tested you for. With showing some CF symptoms it is very important they give you full genetic testing.

It does sound like perhaps you have some other things going on that may not be related to CF, so as others have said, don't get too wrapped up in it all until you know more about the testing and the results.

Please let us know what type of testing they are doing and when you will have the results.

 

[Alyssa]

You are on the right track - CF is no longer only a childhood disease. Many people are being diagnosed later in life. My kids were teenagers, others are in the 40's or 50's before a doctor figures it out. Keep looking for answers.

Testing for CF can be confusing and sometimes misleading, as sweat tests are not always clear cut if in the high normal or borderline area, and genetic testing is not thorough if not a complete test (there are currently 1541 genes to test for - often times doctors will start with a screening of less than 100 genes. They then tell the patient they tested negative on the gene test.... this is something you need to watch out for and specifically ask how many genes they tested you for. With showing some CF symptoms it is very important they give you full genetic testing.

It does sound like perhaps you have some other things going on that may not be related to CF, so as others have said, don't get too wrapped up in it all until you know more about the testing and the results.

Please let us know what type of testing they are doing and when you will have the results.

 

[Alyssa]

You are on the right track - CF is no longer only a childhood disease. Many people are being diagnosed later in life. My kids were teenagers, others are in the 40's or 50's before a doctor figures it out. Keep looking for answers.

Testing for CF can be confusing and sometimes misleading, as sweat tests are not always clear cut if in the high normal or borderline area, and genetic testing is not thorough if not a complete test (there are currently 1541 genes to test for - often times doctors will start with a screening of less than 100 genes. They then tell the patient they tested negative on the gene test.... this is something you need to watch out for and specifically ask how many genes they tested you for. With showing some CF symptoms it is very important they give you full genetic testing.

It does sound like perhaps you have some other things going on that may not be related to CF, so as others have said, don't get too wrapped up in it all until you know more about the testing and the results.

Please let us know what type of testing they are doing and when you will have the results.

 

[Alyssa]

You are on the right track - CF is no longer only a childhood disease. Many people are being diagnosed later in life. My kids were teenagers, others are in the 40's or 50's before a doctor figures it out. Keep looking for answers.

Testing for CF can be confusing and sometimes misleading, as sweat tests are not always clear cut if in the high normal or borderline area, and genetic testing is not thorough if not a complete test (there are currently 1541 genes to test for - often times doctors will start with a screening of less than 100 genes. They then tell the patient they tested negative on the gene test.... this is something you need to watch out for and specifically ask how many genes they tested you for. With showing some CF symptoms it is very important they give you full genetic testing.

It does sound like perhaps you have some other things going on that may not be related to CF, so as others have said, don't get too wrapped up in it all until you know more about the testing and the results.

Please let us know what type of testing they are doing and when you will have the results.

 

[Alyssa]

You are on the right track - CF is no longer only a childhood disease. Many people are being diagnosed later in life. My kids were teenagers, others are in the 40's or 50's before a doctor figures it out. Keep looking for answers.

Testing for CF can be confusing and sometimes misleading, as sweat tests are not always clear cut if in the high normal or borderline area, and genetic testing is not thorough if not a complete test (there are currently 1541 genes to test for - often times doctors will start with a screening of less than 100 genes. They then tell the patient they tested negative on the gene test.... this is something you need to watch out for and specifically ask how many genes they tested you for. With showing some CF symptoms it is very important they give you full genetic testing.

It does sound like perhaps you have some other things going on that may not be related to CF, so as others have said, don't get too wrapped up in it all until you know more about the testing and the results.

Please let us know what type of testing they are doing and when you will have the results.

 

[Quackie]

I agree with all, don't stress on this until you get the rstults of te test. Easier said then done, I'm sure. But remember that those with CF are affected by it in different ways. I personally am panceatic sufficient (not that you can't tell by the picuture<img src="i/expressions/face-icon-small-smile.gif" border="0">), and others are not. But please do come back and let us in on the results of the test.

 

[Quackie]

I agree with all, don't stress on this until you get the rstults of te test. Easier said then done, I'm sure. But remember that those with CF are affected by it in different ways. I personally am panceatic sufficient (not that you can't tell by the picuture<img src="i/expressions/face-icon-small-smile.gif" border="0">), and others are not. But please do come back and let us in on the results of the test.

 

[Quackie]

I agree with all, don't stress on this until you get the rstults of te test. Easier said then done, I'm sure. But remember that those with CF are affected by it in different ways. I personally am panceatic sufficient (not that you can't tell by the picuture<img src="i/expressions/face-icon-small-smile.gif" border="0">), and others are not. But please do come back and let us in on the results of the test.

 

[Quackie]

I agree with all, don't stress on this until you get the rstults of te test. Easier said then done, I'm sure. But remember that those with CF are affected by it in different ways. I personally am panceatic sufficient (not that you can't tell by the picuture<img src="i/expressions/face-icon-small-smile.gif" border="0">), and others are not. But please do come back and let us in on the results of the test.

 

[Quackie]

I agree with all, don't stress on this until you get the rstults of te test. Easier said then done, I'm sure. But remember that those with CF are affected by it in different ways. I personally am panceatic sufficient (not that you can't tell by the picuture<img src="i/expressions/face-icon-small-smile.gif" border="0">), and others are not. But please do come back and let us in on the results of the test.