Test Result - Does this rule out CF?

Nervous1 · Jul 30, 2007

I was very upset when they told me they would only be testing for 12 or 13 mutations, but my pushing got me nowhere. They said that when the results come back we'll see how to proceed. Now I'll probably be sent to a geneticist who will make that decision.

The whole process is so long. It looks like I will have to survive months more of waiting until I get a definitive answer if I ever do at all.

Thanks for your support though!

Nervous1 · Jul 30, 2007

I was very upset when they told me they would only be testing for 12 or 13 mutations, but my pushing got me nowhere. They said that when the results come back we'll see how to proceed. Now I'll probably be sent to a geneticist who will make that decision.

The whole process is so long. It looks like I will have to survive months more of waiting until I get a definitive answer if I ever do at all.

Thanks for your support though!

Nervous1 · Jul 30, 2007

I was very upset when they told me they would only be testing for 12 or 13 mutations, but my pushing got me nowhere. They said that when the results come back we'll see how to proceed. Now I'll probably be sent to a geneticist who will make that decision.

The whole process is so long. It looks like I will have to survive months more of waiting until I get a definitive answer if I ever do at all.

Thanks for your support though!

Nervous1 · Jul 30, 2007

I was very upset when they told me they would only be testing for 12 or 13 mutations, but my pushing got me nowhere. They said that when the results come back we'll see how to proceed. Now I'll probably be sent to a geneticist who will make that decision.

The whole process is so long. It looks like I will have to survive months more of waiting until I get a definitive answer if I ever do at all.

Thanks for your support though!

Nervous1 · Jul 30, 2007

I was very upset when they told me they would only be testing for 12 or 13 mutations, but my pushing got me nowhere. They said that when the results come back we'll see how to proceed. Now I'll probably be sent to a geneticist who will make that decision.

The whole process is so long. It looks like I will have to survive months more of waiting until I get a definitive answer if I ever do at all.

Thanks for your support though!

Emily65Roses · Jul 30, 2007

When it comes to this type of stuff, you have to be a royal pain in the ass with your pushiness. If the docs you're seeing don't stand for it and don't do what you want, you move on to the next one. And so on. Sometimes it takes a few docs to get it done.

A lot of docs still think of CF as a "childhood" disease and will not accept the idea of an adult being dx with it. So they'll test for 12 to humor you, and then move on. But the reality is, plenty of adults are dx with CF. And if you want to be more thoroughly tested (which seems like an intelligent idea), you have to be a real ass to get it done.

Good luck!

Emily65Roses · Jul 30, 2007

When it comes to this type of stuff, you have to be a royal pain in the ass with your pushiness. If the docs you're seeing don't stand for it and don't do what you want, you move on to the next one. And so on. Sometimes it takes a few docs to get it done.

A lot of docs still think of CF as a "childhood" disease and will not accept the idea of an adult being dx with it. So they'll test for 12 to humor you, and then move on. But the reality is, plenty of adults are dx with CF. And if you want to be more thoroughly tested (which seems like an intelligent idea), you have to be a real ass to get it done.

Good luck!

Emily65Roses · Jul 30, 2007

When it comes to this type of stuff, you have to be a royal pain in the ass with your pushiness. If the docs you're seeing don't stand for it and don't do what you want, you move on to the next one. And so on. Sometimes it takes a few docs to get it done.

A lot of docs still think of CF as a "childhood" disease and will not accept the idea of an adult being dx with it. So they'll test for 12 to humor you, and then move on. But the reality is, plenty of adults are dx with CF. And if you want to be more thoroughly tested (which seems like an intelligent idea), you have to be a real ass to get it done.

Good luck!

Emily65Roses · Jul 30, 2007

When it comes to this type of stuff, you have to be a royal pain in the ass with your pushiness. If the docs you're seeing don't stand for it and don't do what you want, you move on to the next one. And so on. Sometimes it takes a few docs to get it done.

A lot of docs still think of CF as a "childhood" disease and will not accept the idea of an adult being dx with it. So they'll test for 12 to humor you, and then move on. But the reality is, plenty of adults are dx with CF. And if you want to be more thoroughly tested (which seems like an intelligent idea), you have to be a real ass to get it done.

Good luck!

Emily65Roses · Jul 30, 2007

When it comes to this type of stuff, you have to be a royal pain in the ass with your pushiness. If the docs you're seeing don't stand for it and don't do what you want, you move on to the next one. And so on. Sometimes it takes a few docs to get it done.

A lot of docs still think of CF as a "childhood" disease and will not accept the idea of an adult being dx with it. So they'll test for 12 to humor you, and then move on. But the reality is, plenty of adults are dx with CF. And if you want to be more thoroughly tested (which seems like an intelligent idea), you have to be a real ass to get it done.

Good luck!

Alyssa · Jul 31, 2007

There are now over 1500 CF gene mutations to test for. Seems to me it's bordering on criminal to only test you for 12. Maybe you could just keep repeating the questions:

"Why are you only looking for 8% of the possible genes that cause CF??

"That means you have NOT checked me for the other 92%"

"Please explain to me, in what other medical situation would you run a test that was only 8% accurate and then tell the patient you know they do not have that problem?"

Alyssa · Jul 31, 2007

There are now over 1500 CF gene mutations to test for. Seems to me it's bordering on criminal to only test you for 12. Maybe you could just keep repeating the questions:

"Why are you only looking for 8% of the possible genes that cause CF??

"That means you have NOT checked me for the other 92%"

"Please explain to me, in what other medical situation would you run a test that was only 8% accurate and then tell the patient you know they do not have that problem?"

Alyssa · Jul 31, 2007

There are now over 1500 CF gene mutations to test for. Seems to me it's bordering on criminal to only test you for 12. Maybe you could just keep repeating the questions:

"Why are you only looking for 8% of the possible genes that cause CF??

"That means you have NOT checked me for the other 92%"

"Please explain to me, in what other medical situation would you run a test that was only 8% accurate and then tell the patient you know they do not have that problem?"

Alyssa · Jul 31, 2007

There are now over 1500 CF gene mutations to test for. Seems to me it's bordering on criminal to only test you for 12. Maybe you could just keep repeating the questions:

"Why are you only looking for 8% of the possible genes that cause CF??

"That means you have NOT checked me for the other 92%"

"Please explain to me, in what other medical situation would you run a test that was only 8% accurate and then tell the patient you know they do not have that problem?"

Alyssa · Jul 31, 2007

There are now over 1500 CF gene mutations to test for. Seems to me it's bordering on criminal to only test you for 12. Maybe you could just keep repeating the questions:

"Why are you only looking for 8% of the possible genes that cause CF??

"That means you have NOT checked me for the other 92%"

"Please explain to me, in what other medical situation would you run a test that was only 8% accurate and then tell the patient you know they do not have that problem?"

Alyssa · Jul 31, 2007