Borderline sweat test???

[MicheleGazelle]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>AnnaH</b></i>

I'm curious as to which accredited CF center diagnosed and treated you. I'm also curious as to what you have cultured. Also, have you repeated the sweat test, pushed for genetic testing or had a nasal differential.
</end quote></div>

I was diagnosed at UC-Davis Medical Center in Sacramento. I had at least two or three sweat tests there and one in San Francisco, probably at Stanford. Likewise, my son had at least 3 sweat tests, two at UC-Davis and on in SF. I had two or three blood tests but I was never told they found a gene. I don't recall seeing the specific results. I was deathly ill at the time, relieved to have an answer that finally helped me, and just trying to keep myself alive. There are a lot of details I didn't have the energy or mental focus for addressing at the time.

No doctor ever told me I cultured anything. They never had any idea what caused the infection or infections that nearly killed me.

I only heard about the nasal differential test relatively recently. So I never had that one.

My life never worked and never made sense until my son and I had this diagnosis. Having this diagnosis has helped me get well when nothing else ever did. So I have difficulty imagining that it is incorrect. Incorrect diagnoses usually don't lead someone to get healthier. They usually just lead to additional frustrations.

Sorry for the late reply. It's been a hectic week.

 

[MicheleGazelle]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>AnnaH</b></i>

I'm curious as to which accredited CF center diagnosed and treated you. I'm also curious as to what you have cultured. Also, have you repeated the sweat test, pushed for genetic testing or had a nasal differential.
</end quote></div>

I was diagnosed at UC-Davis Medical Center in Sacramento. I had at least two or three sweat tests there and one in San Francisco, probably at Stanford. Likewise, my son had at least 3 sweat tests, two at UC-Davis and on in SF. I had two or three blood tests but I was never told they found a gene. I don't recall seeing the specific results. I was deathly ill at the time, relieved to have an answer that finally helped me, and just trying to keep myself alive. There are a lot of details I didn't have the energy or mental focus for addressing at the time.

No doctor ever told me I cultured anything. They never had any idea what caused the infection or infections that nearly killed me.

I only heard about the nasal differential test relatively recently. So I never had that one.

My life never worked and never made sense until my son and I had this diagnosis. Having this diagnosis has helped me get well when nothing else ever did. So I have difficulty imagining that it is incorrect. Incorrect diagnoses usually don't lead someone to get healthier. They usually just lead to additional frustrations.

Sorry for the late reply. It's been a hectic week.

 

[MicheleGazelle]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>AnnaH</b></i>

I'm curious as to which accredited CF center diagnosed and treated you. I'm also curious as to what you have cultured. Also, have you repeated the sweat test, pushed for genetic testing or had a nasal differential.
</end quote></div>

I was diagnosed at UC-Davis Medical Center in Sacramento. I had at least two or three sweat tests there and one in San Francisco, probably at Stanford. Likewise, my son had at least 3 sweat tests, two at UC-Davis and on in SF. I had two or three blood tests but I was never told they found a gene. I don't recall seeing the specific results. I was deathly ill at the time, relieved to have an answer that finally helped me, and just trying to keep myself alive. There are a lot of details I didn't have the energy or mental focus for addressing at the time.

No doctor ever told me I cultured anything. They never had any idea what caused the infection or infections that nearly killed me.

I only heard about the nasal differential test relatively recently. So I never had that one.

My life never worked and never made sense until my son and I had this diagnosis. Having this diagnosis has helped me get well when nothing else ever did. So I have difficulty imagining that it is incorrect. Incorrect diagnoses usually don't lead someone to get healthier. They usually just lead to additional frustrations.

Sorry for the late reply. It's been a hectic week.

 

[MicheleGazelle]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>AnnaH</b></i>

I'm curious as to which accredited CF center diagnosed and treated you. I'm also curious as to what you have cultured. Also, have you repeated the sweat test, pushed for genetic testing or had a nasal differential.
</end quote>

I was diagnosed at UC-Davis Medical Center in Sacramento. I had at least two or three sweat tests there and one in San Francisco, probably at Stanford. Likewise, my son had at least 3 sweat tests, two at UC-Davis and on in SF. I had two or three blood tests but I was never told they found a gene. I don't recall seeing the specific results. I was deathly ill at the time, relieved to have an answer that finally helped me, and just trying to keep myself alive. There are a lot of details I didn't have the energy or mental focus for addressing at the time.

No doctor ever told me I cultured anything. They never had any idea what caused the infection or infections that nearly killed me.

I only heard about the nasal differential test relatively recently. So I never had that one.

My life never worked and never made sense until my son and I had this diagnosis. Having this diagnosis has helped me get well when nothing else ever did. So I have difficulty imagining that it is incorrect. Incorrect diagnoses usually don't lead someone to get healthier. They usually just lead to additional frustrations.

Sorry for the late reply. It's been a hectic week.

 

[MicheleGazelle]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>AnnaH</b></i>
<br />
<br />I'm curious as to which accredited CF center diagnosed and treated you. I'm also curious as to what you have cultured. Also, have you repeated the sweat test, pushed for genetic testing or had a nasal differential.
<br /></end quote>
<br />
<br />I was diagnosed at UC-Davis Medical Center in Sacramento. I had at least two or three sweat tests there and one in San Francisco, probably at Stanford. Likewise, my son had at least 3 sweat tests, two at UC-Davis and on in SF. I had two or three blood tests but I was never told they found a gene. I don't recall seeing the specific results. I was deathly ill at the time, relieved to have an answer that finally helped me, and just trying to keep myself alive. There are a lot of details I didn't have the energy or mental focus for addressing at the time.
<br />
<br />No doctor ever told me I cultured anything. They never had any idea what caused the infection or infections that nearly killed me.
<br />
<br />I only heard about the nasal differential test relatively recently. So I never had that one.
<br />
<br />My life never worked and never made sense until my son and I had this diagnosis. Having this diagnosis has helped me get well when nothing else ever did. So I have difficulty imagining that it is incorrect. Incorrect diagnoses usually don't lead someone to get healthier. They usually just lead to additional frustrations.
<br />
<br />Sorry for the late reply. It's been a hectic week.

 

[flatfordl]

<div class="FTQUOTE"><begin quote>I am primarily a sinus sufferer. I was diagnosed with "atypical CF" with sweat chlorides of 41. They did DNA tests and found nothing. My insurance then turned down the request for a more expensive, more comprehensive DNA test. </end quote></div>

I am surprised your insurance won't pay for more intense genetic testing but are willing to pay for the expensive CF drugs without a proper diagnosis?!

Have you brought this up to them? I am the kind of person who HAS to know. So, getting genetics would be peace of mind and proper diagnosis. If you explained to the insurance that they might save lots of money if they tested and you did not have CF maybe they would test you.

Good luck and I wish you well no matter what your diagnosis is.

 

[flatfordl]

<div class="FTQUOTE"><begin quote>I am primarily a sinus sufferer. I was diagnosed with "atypical CF" with sweat chlorides of 41. They did DNA tests and found nothing. My insurance then turned down the request for a more expensive, more comprehensive DNA test. </end quote></div>

I am surprised your insurance won't pay for more intense genetic testing but are willing to pay for the expensive CF drugs without a proper diagnosis?!

Have you brought this up to them? I am the kind of person who HAS to know. So, getting genetics would be peace of mind and proper diagnosis. If you explained to the insurance that they might save lots of money if they tested and you did not have CF maybe they would test you.

Good luck and I wish you well no matter what your diagnosis is.

 

[flatfordl]

<div class="FTQUOTE"><begin quote>I am primarily a sinus sufferer. I was diagnosed with "atypical CF" with sweat chlorides of 41. They did DNA tests and found nothing. My insurance then turned down the request for a more expensive, more comprehensive DNA test. </end quote></div>

I am surprised your insurance won't pay for more intense genetic testing but are willing to pay for the expensive CF drugs without a proper diagnosis?!

Have you brought this up to them? I am the kind of person who HAS to know. So, getting genetics would be peace of mind and proper diagnosis. If you explained to the insurance that they might save lots of money if they tested and you did not have CF maybe they would test you.

Good luck and I wish you well no matter what your diagnosis is.

 

[flatfordl]

<div class="FTQUOTE"><begin quote>I am primarily a sinus sufferer. I was diagnosed with "atypical CF" with sweat chlorides of 41. They did DNA tests and found nothing. My insurance then turned down the request for a more expensive, more comprehensive DNA test. </end quote>

I am surprised your insurance won't pay for more intense genetic testing but are willing to pay for the expensive CF drugs without a proper diagnosis?!

Have you brought this up to them? I am the kind of person who HAS to know. So, getting genetics would be peace of mind and proper diagnosis. If you explained to the insurance that they might save lots of money if they tested and you did not have CF maybe they would test you.

Good luck and I wish you well no matter what your diagnosis is.

 

[flatfordl]

<div class="FTQUOTE"><begin quote>I am primarily a sinus sufferer. I was diagnosed with "atypical CF" with sweat chlorides of 41. They did DNA tests and found nothing. My insurance then turned down the request for a more expensive, more comprehensive DNA test. </end quote>
<br />
<br />I am surprised your insurance won't pay for more intense genetic testing but are willing to pay for the expensive CF drugs without a proper diagnosis?!
<br />
<br />Have you brought this up to them? I am the kind of person who HAS to know. So, getting genetics would be peace of mind and proper diagnosis. If you explained to the insurance that they might save lots of money if they tested and you did not have CF maybe they would test you.
<br />
<br />Good luck and I wish you well no matter what your diagnosis is.
<br />
<br />

 

[MicheleGazelle]

<div class="FTQUOTE"><begin quote>I am surprised your insurance won't pay for more intense genetic testing but are willing to pay for the expensive CF drugs without a proper diagnosis?!



Have you brought this up to them? </end quote></div>

I was too sick to fight with them over it at the time and was just glad to finally be getting some kind of helpful treatment. Prior to diagnosis, I often got zero treatment while waiting for additional testing. I currently am not on any prescription drugs and was never on some of the extremely expensive things that some people with CF take. So that wouldn't be a basis for pushing for anything with my insurance.

I feel I know what I need to know to get well. So I haven't had any need for additional "proof".

 

[MicheleGazelle]

<div class="FTQUOTE"><begin quote>I am surprised your insurance won't pay for more intense genetic testing but are willing to pay for the expensive CF drugs without a proper diagnosis?!



Have you brought this up to them? </end quote></div>

I was too sick to fight with them over it at the time and was just glad to finally be getting some kind of helpful treatment. Prior to diagnosis, I often got zero treatment while waiting for additional testing. I currently am not on any prescription drugs and was never on some of the extremely expensive things that some people with CF take. So that wouldn't be a basis for pushing for anything with my insurance.

I feel I know what I need to know to get well. So I haven't had any need for additional "proof".

 

[MicheleGazelle]

<div class="FTQUOTE"><begin quote>I am surprised your insurance won't pay for more intense genetic testing but are willing to pay for the expensive CF drugs without a proper diagnosis?!



Have you brought this up to them? </end quote></div>

I was too sick to fight with them over it at the time and was just glad to finally be getting some kind of helpful treatment. Prior to diagnosis, I often got zero treatment while waiting for additional testing. I currently am not on any prescription drugs and was never on some of the extremely expensive things that some people with CF take. So that wouldn't be a basis for pushing for anything with my insurance.

I feel I know what I need to know to get well. So I haven't had any need for additional "proof".

 

[MicheleGazelle]

<div class="FTQUOTE"><begin quote>I am surprised your insurance won't pay for more intense genetic testing but are willing to pay for the expensive CF drugs without a proper diagnosis?!



Have you brought this up to them? </end quote>

I was too sick to fight with them over it at the time and was just glad to finally be getting some kind of helpful treatment. Prior to diagnosis, I often got zero treatment while waiting for additional testing. I currently am not on any prescription drugs and was never on some of the extremely expensive things that some people with CF take. So that wouldn't be a basis for pushing for anything with my insurance.

I feel I know what I need to know to get well. So I haven't had any need for additional "proof".

 

[MicheleGazelle]

<div class="FTQUOTE"><begin quote>I am surprised your insurance won't pay for more intense genetic testing but are willing to pay for the expensive CF drugs without a proper diagnosis?!
<br />
<br />
<br />
<br />Have you brought this up to them? </end quote>
<br />
<br />I was too sick to fight with them over it at the time and was just glad to finally be getting some kind of helpful treatment. Prior to diagnosis, I often got zero treatment while waiting for additional testing. I currently am not on any prescription drugs and was never on some of the extremely expensive things that some people with CF take. So that wouldn't be a basis for pushing for anything with my insurance.
<br />
<br />I feel I know what I need to know to get well. So I haven't had any need for additional "proof".