Nervously Waiting for Results

[Alyssa]

I strongly disagree with the wording in the article that Lauren posted, where they say sweat test under 40 is "highly unlikely." The most I would say is somewhat less likely but even that I couldn't confidently say, when a person is also showing symptoms of CF.

<b>The truth is MANY people who have CF, have sweat test numbers in the 20's and 30's. </b>

My daughter has been testing out at 38 since she was 5 years old, we now know she has two CF mutations because of genetic testing. My son test out at 41 and also has both mutations. There are many other people on this site who test out even lower than my kids - if you want to hear from them try searching the subject or better yet start a new post in the adult section and the family section asking people to respond if they have sweat test numbers under 40.

My daughter was clearly misdiagnosed and we were mislead for 8 years because the doctors relied on sweat test numbers only. <b>It is especially important that you continue to pursue possible CF diagnosis or treatment because you have some CF symptoms</b> and in my opinion a very near positive sweat test number. The number 40 is just not that perfect of a cut off.

Don't be fooled just because you do not have digestive issues, a small percentage (I think 20%, but I could be wrong) of people with CF are pancreatic sufficient, so it is just not part of the disease for them.

Best wishes, and please continue to post and give us updates

edited to add: Well, on second thought, I guess using the words "highly unlikely" is actually better than "negative" so the wording they use is better than the standard "negative" "borderline" "positive" but the point I am making is the number scale cannot be used as absolutes - there are many cases of people having sweat test numbers well below 40.

 

[Alyssa]

I strongly disagree with the wording in the article that Lauren posted, where they say sweat test under 40 is "highly unlikely." The most I would say is somewhat less likely but even that I couldn't confidently say, when a person is also showing symptoms of CF.

<b>The truth is MANY people who have CF, have sweat test numbers in the 20's and 30's. </b>

My daughter has been testing out at 38 since she was 5 years old, we now know she has two CF mutations because of genetic testing. My son test out at 41 and also has both mutations. There are many other people on this site who test out even lower than my kids - if you want to hear from them try searching the subject or better yet start a new post in the adult section and the family section asking people to respond if they have sweat test numbers under 40.

My daughter was clearly misdiagnosed and we were mislead for 8 years because the doctors relied on sweat test numbers only. <b>It is especially important that you continue to pursue possible CF diagnosis or treatment because you have some CF symptoms</b> and in my opinion a very near positive sweat test number. The number 40 is just not that perfect of a cut off.

Don't be fooled just because you do not have digestive issues, a small percentage (I think 20%, but I could be wrong) of people with CF are pancreatic sufficient, so it is just not part of the disease for them.

Best wishes, and please continue to post and give us updates

edited to add: Well, on second thought, I guess using the words "highly unlikely" is actually better than "negative" so the wording they use is better than the standard "negative" "borderline" "positive" but the point I am making is the number scale cannot be used as absolutes - there are many cases of people having sweat test numbers well below 40.

 

[Alyssa]

I strongly disagree with the wording in the article that Lauren posted, where they say sweat test under 40 is "highly unlikely." The most I would say is somewhat less likely but even that I couldn't confidently say, when a person is also showing symptoms of CF.

<b>The truth is MANY people who have CF, have sweat test numbers in the 20's and 30's. </b>

My daughter has been testing out at 38 since she was 5 years old, we now know she has two CF mutations because of genetic testing. My son test out at 41 and also has both mutations. There are many other people on this site who test out even lower than my kids - if you want to hear from them try searching the subject or better yet start a new post in the adult section and the family section asking people to respond if they have sweat test numbers under 40.

My daughter was clearly misdiagnosed and we were mislead for 8 years because the doctors relied on sweat test numbers only. <b>It is especially important that you continue to pursue possible CF diagnosis or treatment because you have some CF symptoms</b> and in my opinion a very near positive sweat test number. The number 40 is just not that perfect of a cut off.

Don't be fooled just because you do not have digestive issues, a small percentage (I think 20%, but I could be wrong) of people with CF are pancreatic sufficient, so it is just not part of the disease for them.

Best wishes, and please continue to post and give us updates

edited to add: Well, on second thought, I guess using the words "highly unlikely" is actually better than "negative" so the wording they use is better than the standard "negative" "borderline" "positive" but the point I am making is the number scale cannot be used as absolutes - there are many cases of people having sweat test numbers well below 40.

 

[Alyssa]

I strongly disagree with the wording in the article that Lauren posted, where they say sweat test under 40 is "highly unlikely." The most I would say is somewhat less likely but even that I couldn't confidently say, when a person is also showing symptoms of CF.

<b>The truth is MANY people who have CF, have sweat test numbers in the 20's and 30's. </b>

My daughter has been testing out at 38 since she was 5 years old, we now know she has two CF mutations because of genetic testing. My son test out at 41 and also has both mutations. There are many other people on this site who test out even lower than my kids - if you want to hear from them try searching the subject or better yet start a new post in the adult section and the family section asking people to respond if they have sweat test numbers under 40.

My daughter was clearly misdiagnosed and we were mislead for 8 years because the doctors relied on sweat test numbers only. <b>It is especially important that you continue to pursue possible CF diagnosis or treatment because you have some CF symptoms</b> and in my opinion a very near positive sweat test number. The number 40 is just not that perfect of a cut off.

Don't be fooled just because you do not have digestive issues, a small percentage (I think 20%, but I could be wrong) of people with CF are pancreatic sufficient, so it is just not part of the disease for them.

Best wishes, and please continue to post and give us updates

edited to add: Well, on second thought, I guess using the words "highly unlikely" is actually better than "negative" so the wording they use is better than the standard "negative" "borderline" "positive" but the point I am making is the number scale cannot be used as absolutes - there are many cases of people having sweat test numbers well below 40.

 

[okok]

I've read in peer reviewed journals that 23% of people with a sweat chloride over 30 have two CFTR mutations. This was a study which reviewed thousands (if i remember correctly it was something like 1200-2000) of sweat test results and followed up with extensive genetic testing and a nasal potential difference test. They did not actually think that everyone with two CFTR mutations had abnormal nasal potential difference testing though and based their CF diagnosis on the nasal potential test not the mutational analysis. Not that this really applies to you anyway since you have symptoms which i am sure if you were found to have two mutations would be attributed to that.

I am confused about what you mean when you say conductivity testing. It is my understanding that sweat chloride concentrations are generally measured directly NOT by conductivity. Was you sweat test preformed by an accredited CF center???

 

[okok]

I've read in peer reviewed journals that 23% of people with a sweat chloride over 30 have two CFTR mutations. This was a study which reviewed thousands (if i remember correctly it was something like 1200-2000) of sweat test results and followed up with extensive genetic testing and a nasal potential difference test. They did not actually think that everyone with two CFTR mutations had abnormal nasal potential difference testing though and based their CF diagnosis on the nasal potential test not the mutational analysis. Not that this really applies to you anyway since you have symptoms which i am sure if you were found to have two mutations would be attributed to that.

I am confused about what you mean when you say conductivity testing. It is my understanding that sweat chloride concentrations are generally measured directly NOT by conductivity. Was you sweat test preformed by an accredited CF center???

 

[okok]

I've read in peer reviewed journals that 23% of people with a sweat chloride over 30 have two CFTR mutations. This was a study which reviewed thousands (if i remember correctly it was something like 1200-2000) of sweat test results and followed up with extensive genetic testing and a nasal potential difference test. They did not actually think that everyone with two CFTR mutations had abnormal nasal potential difference testing though and based their CF diagnosis on the nasal potential test not the mutational analysis. Not that this really applies to you anyway since you have symptoms which i am sure if you were found to have two mutations would be attributed to that.

I am confused about what you mean when you say conductivity testing. It is my understanding that sweat chloride concentrations are generally measured directly NOT by conductivity. Was you sweat test preformed by an accredited CF center???

 

[okok]

I've read in peer reviewed journals that 23% of people with a sweat chloride over 30 have two CFTR mutations. This was a study which reviewed thousands (if i remember correctly it was something like 1200-2000) of sweat test results and followed up with extensive genetic testing and a nasal potential difference test. They did not actually think that everyone with two CFTR mutations had abnormal nasal potential difference testing though and based their CF diagnosis on the nasal potential test not the mutational analysis. Not that this really applies to you anyway since you have symptoms which i am sure if you were found to have two mutations would be attributed to that.

I am confused about what you mean when you say conductivity testing. It is my understanding that sweat chloride concentrations are generally measured directly NOT by conductivity. Was you sweat test preformed by an accredited CF center???

 

[okok]

I've read in peer reviewed journals that 23% of people with a sweat chloride over 30 have two CFTR mutations. This was a study which reviewed thousands (if i remember correctly it was something like 1200-2000) of sweat test results and followed up with extensive genetic testing and a nasal potential difference test. They did not actually think that everyone with two CFTR mutations had abnormal nasal potential difference testing though and based their CF diagnosis on the nasal potential test not the mutational analysis. Not that this really applies to you anyway since you have symptoms which i am sure if you were found to have two mutations would be attributed to that.

I am confused about what you mean when you say conductivity testing. It is my understanding that sweat chloride concentrations are generally measured directly NOT by conductivity. Was you sweat test preformed by an accredited CF center???

 

[okok]

I've read in peer reviewed journals that 23% of people with a sweat chloride over 30 have two CFTR mutations. This was a study which reviewed thousands (if i remember correctly it was something like 1200-2000) of sweat test results and followed up with extensive genetic testing and a nasal potential difference test. They did not actually think that everyone with two CFTR mutations had abnormal nasal potential difference testing though and based their CF diagnosis on the nasal potential test not the mutational analysis. Not that this really applies to you anyway since you have symptoms which i am sure if you were found to have two mutations would be attributed to that.

I am confused about what you mean when you say conductivity testing. It is my understanding that sweat chloride concentrations are generally measured directly NOT by conductivity. Was you sweat test preformed by an accredited CF center???

 

[Nervous1]

Thank you all for responding!

In answer to your questions, the sweat test that was done did not measure sweat chloride directly. It was a conductivity test and according to the report I received anything under 50 is considered normal, 50-70 borderline, and above 70 positive. Since the nurse doing the test had never before tested an adult, she had no idea whether the range is different for adults than it is for children. No, this was not done at an accredited US CF center since I live abroad.

Having read that even a sweat chloride measurement is not definitive, I insisted on the genetic testing. It will take another 2-3 weeks before I get the results but I know they are not doing a full analysis as is done by Ambry, but rather testing what is typical based on my ethnicity.

I have gone through so many tests in the last 3 years with no resolution that I don't know what I want to hear at this point ... that it is or is not CF. Reading your posts, it sounds like that if it is CF at least there is a chance that with the proper treatment I might start feeling better. On the other hand noone wants to be diagnosed with such an awful disease.

Do any of you have any tips on how to get through the nerve racking periods of uncertainty? I'm sure many of you have gone through much worse waiting for transplants, etc. How do you get your minds off all the "what ifs" as you wait for test results, etc? I try to keep myself busy with work, my family, and things I enjoy but lately I have been trying to ease back on activities in an attempt to feel better, and I can't keep my mind off the "what ifs"?

Thank you all for your support!

 

[Nervous1]

Thank you all for responding!

In answer to your questions, the sweat test that was done did not measure sweat chloride directly. It was a conductivity test and according to the report I received anything under 50 is considered normal, 50-70 borderline, and above 70 positive. Since the nurse doing the test had never before tested an adult, she had no idea whether the range is different for adults than it is for children. No, this was not done at an accredited US CF center since I live abroad.

Having read that even a sweat chloride measurement is not definitive, I insisted on the genetic testing. It will take another 2-3 weeks before I get the results but I know they are not doing a full analysis as is done by Ambry, but rather testing what is typical based on my ethnicity.

I have gone through so many tests in the last 3 years with no resolution that I don't know what I want to hear at this point ... that it is or is not CF. Reading your posts, it sounds like that if it is CF at least there is a chance that with the proper treatment I might start feeling better. On the other hand noone wants to be diagnosed with such an awful disease.

Do any of you have any tips on how to get through the nerve racking periods of uncertainty? I'm sure many of you have gone through much worse waiting for transplants, etc. How do you get your minds off all the "what ifs" as you wait for test results, etc? I try to keep myself busy with work, my family, and things I enjoy but lately I have been trying to ease back on activities in an attempt to feel better, and I can't keep my mind off the "what ifs"?

Thank you all for your support!

 

[Nervous1]

Thank you all for responding!

In answer to your questions, the sweat test that was done did not measure sweat chloride directly. It was a conductivity test and according to the report I received anything under 50 is considered normal, 50-70 borderline, and above 70 positive. Since the nurse doing the test had never before tested an adult, she had no idea whether the range is different for adults than it is for children. No, this was not done at an accredited US CF center since I live abroad.

Having read that even a sweat chloride measurement is not definitive, I insisted on the genetic testing. It will take another 2-3 weeks before I get the results but I know they are not doing a full analysis as is done by Ambry, but rather testing what is typical based on my ethnicity.

I have gone through so many tests in the last 3 years with no resolution that I don't know what I want to hear at this point ... that it is or is not CF. Reading your posts, it sounds like that if it is CF at least there is a chance that with the proper treatment I might start feeling better. On the other hand noone wants to be diagnosed with such an awful disease.

Do any of you have any tips on how to get through the nerve racking periods of uncertainty? I'm sure many of you have gone through much worse waiting for transplants, etc. How do you get your minds off all the "what ifs" as you wait for test results, etc? I try to keep myself busy with work, my family, and things I enjoy but lately I have been trying to ease back on activities in an attempt to feel better, and I can't keep my mind off the "what ifs"?

Thank you all for your support!

 

[Nervous1]

Thank you all for responding!

In answer to your questions, the sweat test that was done did not measure sweat chloride directly. It was a conductivity test and according to the report I received anything under 50 is considered normal, 50-70 borderline, and above 70 positive. Since the nurse doing the test had never before tested an adult, she had no idea whether the range is different for adults than it is for children. No, this was not done at an accredited US CF center since I live abroad.

Having read that even a sweat chloride measurement is not definitive, I insisted on the genetic testing. It will take another 2-3 weeks before I get the results but I know they are not doing a full analysis as is done by Ambry, but rather testing what is typical based on my ethnicity.

I have gone through so many tests in the last 3 years with no resolution that I don't know what I want to hear at this point ... that it is or is not CF. Reading your posts, it sounds like that if it is CF at least there is a chance that with the proper treatment I might start feeling better. On the other hand noone wants to be diagnosed with such an awful disease.

Do any of you have any tips on how to get through the nerve racking periods of uncertainty? I'm sure many of you have gone through much worse waiting for transplants, etc. How do you get your minds off all the "what ifs" as you wait for test results, etc? I try to keep myself busy with work, my family, and things I enjoy but lately I have been trying to ease back on activities in an attempt to feel better, and I can't keep my mind off the "what ifs"?

Thank you all for your support!

 

[Nervous1]

Thank you all for responding!

In answer to your questions, the sweat test that was done did not measure sweat chloride directly. It was a conductivity test and according to the report I received anything under 50 is considered normal, 50-70 borderline, and above 70 positive. Since the nurse doing the test had never before tested an adult, she had no idea whether the range is different for adults than it is for children. No, this was not done at an accredited US CF center since I live abroad.

Having read that even a sweat chloride measurement is not definitive, I insisted on the genetic testing. It will take another 2-3 weeks before I get the results but I know they are not doing a full analysis as is done by Ambry, but rather testing what is typical based on my ethnicity.

I have gone through so many tests in the last 3 years with no resolution that I don't know what I want to hear at this point ... that it is or is not CF. Reading your posts, it sounds like that if it is CF at least there is a chance that with the proper treatment I might start feeling better. On the other hand noone wants to be diagnosed with such an awful disease.

Do any of you have any tips on how to get through the nerve racking periods of uncertainty? I'm sure many of you have gone through much worse waiting for transplants, etc. How do you get your minds off all the "what ifs" as you wait for test results, etc? I try to keep myself busy with work, my family, and things I enjoy but lately I have been trying to ease back on activities in an attempt to feel better, and I can't keep my mind off the "what ifs"?

Thank you all for your support!

 

[Nervous1]

Thank you all for responding!

In answer to your questions, the sweat test that was done did not measure sweat chloride directly. It was a conductivity test and according to the report I received anything under 50 is considered normal, 50-70 borderline, and above 70 positive. Since the nurse doing the test had never before tested an adult, she had no idea whether the range is different for adults than it is for children. No, this was not done at an accredited US CF center since I live abroad.

Having read that even a sweat chloride measurement is not definitive, I insisted on the genetic testing. It will take another 2-3 weeks before I get the results but I know they are not doing a full analysis as is done by Ambry, but rather testing what is typical based on my ethnicity.

I have gone through so many tests in the last 3 years with no resolution that I don't know what I want to hear at this point ... that it is or is not CF. Reading your posts, it sounds like that if it is CF at least there is a chance that with the proper treatment I might start feeling better. On the other hand noone wants to be diagnosed with such an awful disease.

Do any of you have any tips on how to get through the nerve racking periods of uncertainty? I'm sure many of you have gone through much worse waiting for transplants, etc. How do you get your minds off all the "what ifs" as you wait for test results, etc? I try to keep myself busy with work, my family, and things I enjoy but lately I have been trying to ease back on activities in an attempt to feel better, and I can't keep my mind off the "what ifs"?

Thank you all for your support!

 

[okok]

I wish i had advice about how to get through the horrible waiting period. The only advice i have is to maybe pick up the new harry potter book and immerse yourself in his drama for a while. Since that won't get you through the whole three weeks maybe pick up some other great novels... I like dorthy dunnet and jane austin and the bronte sisters.

PS

If your sweat chloride was measured by conductivity then the range that your doctor's give you is probably accurate since the range people cite on this website refers directly to the concentration of chloride in the sweat not a conductivity measurment.

 

[okok]

I wish i had advice about how to get through the horrible waiting period. The only advice i have is to maybe pick up the new harry potter book and immerse yourself in his drama for a while. Since that won't get you through the whole three weeks maybe pick up some other great novels... I like dorthy dunnet and jane austin and the bronte sisters.

PS

If your sweat chloride was measured by conductivity then the range that your doctor's give you is probably accurate since the range people cite on this website refers directly to the concentration of chloride in the sweat not a conductivity measurment.

 

[okok]

I wish i had advice about how to get through the horrible waiting period. The only advice i have is to maybe pick up the new harry potter book and immerse yourself in his drama for a while. Since that won't get you through the whole three weeks maybe pick up some other great novels... I like dorthy dunnet and jane austin and the bronte sisters.

PS

If your sweat chloride was measured by conductivity then the range that your doctor's give you is probably accurate since the range people cite on this website refers directly to the concentration of chloride in the sweat not a conductivity measurment.

 

[okok]

I wish i had advice about how to get through the horrible waiting period. The only advice i have is to maybe pick up the new harry potter book and immerse yourself in his drama for a while. Since that won't get you through the whole three weeks maybe pick up some other great novels... I like dorthy dunnet and jane austin and the bronte sisters.

PS

If your sweat chloride was measured by conductivity then the range that your doctor's give you is probably accurate since the range people cite on this website refers directly to the concentration of chloride in the sweat not a conductivity measurment.