Sweat testing

[stephen]

Please hear me!

I am 68 and have CF. Over the past years, multiple sweat tests, with multiple doctors, at multiple NY hospitals always came up negative. My numbers were around 15 - 20.

Five years ago, because of increasing bleeding, I went to National Jewish in Denver to get their advice concerning surgery. They conducted Genetic tests and found that I had two CF mutations. That diagnosis opened the doors for me to get drugs prescribed for CF: TOBI, Pulmozyme, Astreanom (Cayston). What a difference in my quality of life!

I urge everyone who suspects CF not to rely on the Sweat Test alone. Get Genetic tests!

 

[stephen]

Please hear me!

I am 68 and have CF. Over the past years, multiple sweat tests, with multiple doctors, at multiple NY hospitals always came up negative. My numbers were around 15 - 20.

Five years ago, because of increasing bleeding, I went to National Jewish in Denver to get their advice concerning surgery. They conducted Genetic tests and found that I had two CF mutations. That diagnosis opened the doors for me to get drugs prescribed for CF: TOBI, Pulmozyme, Astreanom (Cayston). What a difference in my quality of life!

I urge everyone who suspects CF not to rely on the Sweat Test alone. Get Genetic tests!

 

[stephen]

Please hear me!

I am 68 and have CF. Over the past years, multiple sweat tests, with multiple doctors, at multiple NY hospitals always came up negative. My numbers were around 15 - 20.

Five years ago, because of increasing bleeding, I went to National Jewish in Denver to get their advice concerning surgery. They conducted Genetic tests and found that I had two CF mutations. That diagnosis opened the doors for me to get drugs prescribed for CF: TOBI, Pulmozyme, Astreanom (Cayston). What a difference in my quality of life!

I urge everyone who suspects CF not to rely on the Sweat Test alone. Get Genetic tests!

 

[stephen]

Please hear me!

I am 68 and have CF. Over the past years, multiple sweat tests, with multiple doctors, at multiple NY hospitals always came up negative. My numbers were around 15 - 20.

Five years ago, because of increasing bleeding, I went to National Jewish in Denver to get their advice concerning surgery. They conducted Genetic tests and found that I had two CF mutations. That diagnosis opened the doors for me to get drugs prescribed for CF: TOBI, Pulmozyme, Astreanom (Cayston). What a difference in my quality of life!

I urge everyone who suspects CF not to rely on the Sweat Test alone. Get Genetic tests!

 

[stephen]

Please hear me!
<br />
<br />I am 68 and have CF. Over the past years, multiple sweat tests, with multiple doctors, at multiple NY hospitals always came up negative. My numbers were around 15 - 20.
<br />
<br />Five years ago, because of increasing bleeding, I went to National Jewish in Denver to get their advice concerning surgery. They conducted Genetic tests and found that I had two CF mutations. That diagnosis opened the doors for me to get drugs prescribed for CF: TOBI, Pulmozyme, Astreanom (Cayston). What a difference in my quality of life!
<br />
<br />I urge everyone who suspects CF not to rely on the Sweat Test alone. Get Genetic tests!

 

[longhorn4life]

Insist on a genetic test. Do you have any idea how painful sweat tests are? They're basically electrocuting you. One is bad enough, but five times is ridiculous. Refuse to let them do any more sweat tests on that poor baby and insist on a genetic test. I'm not saying it to be mean, but sweat tests really are painful, especially if they test both arms because the left arm hurts five times more than the right for some reason.

 

[longhorn4life]

Insist on a genetic test. Do you have any idea how painful sweat tests are? They're basically electrocuting you. One is bad enough, but five times is ridiculous. Refuse to let them do any more sweat tests on that poor baby and insist on a genetic test. I'm not saying it to be mean, but sweat tests really are painful, especially if they test both arms because the left arm hurts five times more than the right for some reason.

 

[longhorn4life]

Insist on a genetic test. Do you have any idea how painful sweat tests are? They're basically electrocuting you. One is bad enough, but five times is ridiculous. Refuse to let them do any more sweat tests on that poor baby and insist on a genetic test. I'm not saying it to be mean, but sweat tests really are painful, especially if they test both arms because the left arm hurts five times more than the right for some reason.

 

[Eden]

longhorn4life - you are the first person that I have seen mention painful sweat testing. The reason I bring this up, is because my son cried during his sweat test. He chose to have his right arm tested first (he calls it his "strong arm"), which he said ouch over and over again during. When they did his left arm, he cried the entire 5 minutes the electrodes were on his arm, saying it hurt. They also weren't able to get much sweat from him, and his left arm was completely inconclusive. Does anyone know if this may indicate that the test was done improperly? I really don't want to put him through it again. Thanks.

 

[Eden]

longhorn4life - you are the first person that I have seen mention painful sweat testing. The reason I bring this up, is because my son cried during his sweat test. He chose to have his right arm tested first (he calls it his "strong arm"), which he said ouch over and over again during. When they did his left arm, he cried the entire 5 minutes the electrodes were on his arm, saying it hurt. They also weren't able to get much sweat from him, and his left arm was completely inconclusive. Does anyone know if this may indicate that the test was done improperly? I really don't want to put him through it again. Thanks.

 

[Eden]

longhorn4life - you are the first person that I have seen mention painful sweat testing. The reason I bring this up, is because my son cried during his sweat test. He chose to have his right arm tested first (he calls it his "strong arm"), which he said ouch over and over again during. When they did his left arm, he cried the entire 5 minutes the electrodes were on his arm, saying it hurt. They also weren't able to get much sweat from him, and his left arm was completely inconclusive. Does anyone know if this may indicate that the test was done improperly? I really don't want to put him through it again. Thanks.

 

[longhorn4life]

Eden, my tests still came back conclusive (99) but the machine they used did say never to use it on the left arm. I don't know why it said that, though, because I didn't ask any questions.

 

[longhorn4life]

Eden, my tests still came back conclusive (99) but the machine they used did say never to use it on the left arm. I don't know why it said that, though, because I didn't ask any questions.

 

[longhorn4life]

Eden, my tests still came back conclusive (99) but the machine they used did say never to use it on the left arm. I don't know why it said that, though, because I didn't ask any questions.

 

[plokm]

I'm due to get a sweat test for CF on December 6th and I have the exact same problem; I just plain don't sweat and due to eczema my skin is quite dry all the time. I also had a test for it when I was 5 but they couldn't get me to sweat and that was in 1995 when they didn't use electrodes they just put you in about 10 coats in a room with a lit fire and radiators on to get the sweat. They never followed it up despite them finding no other cause for my secondary pneumonia because they said that I simply didn't look like I had it because I was a fat baby (but my daughter has the most common CF mutation and according to the hospital she is the chubbiest cf baby they've seen- she's 15 months old, over 2 stone and in the top 5% on the weight chart for ALL babies her age including non-CF babies!!). I would prefer a sweat test cos if I do have CF i suspect that it'd probably be Atypical or very mild CF and I've heard 2 cases of Atypical CF where their sweat tests have come back negative. One part of me thinks I have it because their is a lot of coincidences pointing towards it but another part of me thinks "Nar you're being stupid" so i feel like I'm already wasting their time by getting a sweat test so I'm too hesitant to get a blood test.I know people with CF who suffer really badly because of it so by getting tested I feel like I'm in someway insulting CF sufferers cos I probably don't have it.It's feels like almost the equivalent of me not having aids and walking into an AIDS support group with a grin on my face and shouting "I HAVE AIDS TOO!".

 

[plokm]

I'm due to get a sweat test for CF on December 6th and I have the exact same problem; I just plain don't sweat and due to eczema my skin is quite dry all the time. I also had a test for it when I was 5 but they couldn't get me to sweat and that was in 1995 when they didn't use electrodes they just put you in about 10 coats in a room with a lit fire and radiators on to get the sweat. They never followed it up despite them finding no other cause for my secondary pneumonia because they said that I simply didn't look like I had it because I was a fat baby (but my daughter has the most common CF mutation and according to the hospital she is the chubbiest cf baby they've seen- she's 15 months old, over 2 stone and in the top 5% on the weight chart for ALL babies her age including non-CF babies!!). I would prefer a sweat test cos if I do have CF i suspect that it'd probably be Atypical or very mild CF and I've heard 2 cases of Atypical CF where their sweat tests have come back negative. One part of me thinks I have it because their is a lot of coincidences pointing towards it but another part of me thinks "Nar you're being stupid" so i feel like I'm already wasting their time by getting a sweat test so I'm too hesitant to get a blood test.I know people with CF who suffer really badly because of it so by getting tested I feel like I'm in someway insulting CF sufferers cos I probably don't have it.It's feels like almost the equivalent of me not having aids and walking into an AIDS support group with a grin on my face and shouting "I HAVE AIDS TOO!".

 

[plokm]

I'm due to get a sweat test for CF on December 6th and I have the exact same problem; I just plain don't sweat and due to eczema my skin is quite dry all the time. I also had a test for it when I was 5 but they couldn't get me to sweat and that was in 1995 when they didn't use electrodes they just put you in about 10 coats in a room with a lit fire and radiators on to get the sweat. They never followed it up despite them finding no other cause for my secondary pneumonia because they said that I simply didn't look like I had it because I was a fat baby (but my daughter has the most common CF mutation and according to the hospital she is the chubbiest cf baby they've seen- she's 15 months old, over 2 stone and in the top 5% on the weight chart for ALL babies her age including non-CF babies!!). I would prefer a sweat test cos if I do have CF i suspect that it'd probably be Atypical or very mild CF and I've heard 2 cases of Atypical CF where their sweat tests have come back negative. One part of me thinks I have it because their is a lot of coincidences pointing towards it but another part of me thinks "Nar you're being stupid" so i feel like I'm already wasting their time by getting a sweat test so I'm too hesitant to get a blood test.I know people with CF who suffer really badly because of it so by getting tested I feel like I'm in someway insulting CF sufferers cos I probably don't have it.It's feels like almost the equivalent of me not having aids and walking into an AIDS support group with a grin on my face and shouting "I HAVE AIDS TOO!".

 

[plokm]

Longhorn4life- I just Googled reasons why electrodes shouldn't be used on the left arm and the only posts I found were people describing sweat tests using both arms. Perhaps it was just a over-cautious warning that they had to put on the machine to prevent suing because it had known to cause one person heart problems or something. I assume heart problems anyway because when people have heart attacks it's always their left arm that gets shooting pains.

 

[plokm]

Longhorn4life- I just Googled reasons why electrodes shouldn't be used on the left arm and the only posts I found were people describing sweat tests using both arms. Perhaps it was just a over-cautious warning that they had to put on the machine to prevent suing because it had known to cause one person heart problems or something. I assume heart problems anyway because when people have heart attacks it's always their left arm that gets shooting pains.

 

[plokm]

Longhorn4life- I just Googled reasons why electrodes shouldn't be used on the left arm and the only posts I found were people describing sweat tests using both arms. Perhaps it was just a over-cautious warning that they had to put on the machine to prevent suing because it had known to cause one person heart problems or something. I assume heart problems anyway because when people have heart attacks it's always their left arm that gets shooting pains.