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looking for info
- Thread starter mrsp86
- Start date
This is sort of tough to answer, because CF isn't at all black and white. I tend to want to say that there is only one KIND of CF, because CF is CF. You have to have two gene mutations to have the disease. You either have it or you don't. It's not like cancer, where there are many different types. Does this make sense?
Symptoms, however, vary widely from patient to patient. One patient may have more problems with digestion, and another might have more lung involvement. Even two patients who have the exact same genetic mutations, can have completely different symptoms. CF can start out harsh, or it can start out mild. Since CF is a progressive disease, we can expect it to become harsher as the years pass. A patient who had only lung involvement as a child, can develop digestive issues as he/she ages. There are endless possibilities in how the disease might progress, but it will progress.
To fight for this test, which is what I think your ultimate goal is, you just have to keep demanding it. They thought there was reason to test for it with the sweat test, so it seems logical to me to finish what they started, and do the genetic test. I really think you need to find a CF doctor. Yours just doesn't know enough about it to understand that sometimes CF isn't quite so obvious.
Good luck.
Stacey
Symptoms, however, vary widely from patient to patient. One patient may have more problems with digestion, and another might have more lung involvement. Even two patients who have the exact same genetic mutations, can have completely different symptoms. CF can start out harsh, or it can start out mild. Since CF is a progressive disease, we can expect it to become harsher as the years pass. A patient who had only lung involvement as a child, can develop digestive issues as he/she ages. There are endless possibilities in how the disease might progress, but it will progress.
To fight for this test, which is what I think your ultimate goal is, you just have to keep demanding it. They thought there was reason to test for it with the sweat test, so it seems logical to me to finish what they started, and do the genetic test. I really think you need to find a CF doctor. Yours just doesn't know enough about it to understand that sometimes CF isn't quite so obvious.
Good luck.
Stacey
This is sort of tough to answer, because CF isn't at all black and white. I tend to want to say that there is only one KIND of CF, because CF is CF. You have to have two gene mutations to have the disease. You either have it or you don't. It's not like cancer, where there are many different types. Does this make sense?
Symptoms, however, vary widely from patient to patient. One patient may have more problems with digestion, and another might have more lung involvement. Even two patients who have the exact same genetic mutations, can have completely different symptoms. CF can start out harsh, or it can start out mild. Since CF is a progressive disease, we can expect it to become harsher as the years pass. A patient who had only lung involvement as a child, can develop digestive issues as he/she ages. There are endless possibilities in how the disease might progress, but it will progress.
To fight for this test, which is what I think your ultimate goal is, you just have to keep demanding it. They thought there was reason to test for it with the sweat test, so it seems logical to me to finish what they started, and do the genetic test. I really think you need to find a CF doctor. Yours just doesn't know enough about it to understand that sometimes CF isn't quite so obvious.
Good luck.
Stacey
Symptoms, however, vary widely from patient to patient. One patient may have more problems with digestion, and another might have more lung involvement. Even two patients who have the exact same genetic mutations, can have completely different symptoms. CF can start out harsh, or it can start out mild. Since CF is a progressive disease, we can expect it to become harsher as the years pass. A patient who had only lung involvement as a child, can develop digestive issues as he/she ages. There are endless possibilities in how the disease might progress, but it will progress.
To fight for this test, which is what I think your ultimate goal is, you just have to keep demanding it. They thought there was reason to test for it with the sweat test, so it seems logical to me to finish what they started, and do the genetic test. I really think you need to find a CF doctor. Yours just doesn't know enough about it to understand that sometimes CF isn't quite so obvious.
Good luck.
Stacey
This is sort of tough to answer, because CF isn't at all black and white. I tend to want to say that there is only one KIND of CF, because CF is CF. You have to have two gene mutations to have the disease. You either have it or you don't. It's not like cancer, where there are many different types. Does this make sense?
Symptoms, however, vary widely from patient to patient. One patient may have more problems with digestion, and another might have more lung involvement. Even two patients who have the exact same genetic mutations, can have completely different symptoms. CF can start out harsh, or it can start out mild. Since CF is a progressive disease, we can expect it to become harsher as the years pass. A patient who had only lung involvement as a child, can develop digestive issues as he/she ages. There are endless possibilities in how the disease might progress, but it will progress.
To fight for this test, which is what I think your ultimate goal is, you just have to keep demanding it. They thought there was reason to test for it with the sweat test, so it seems logical to me to finish what they started, and do the genetic test. I really think you need to find a CF doctor. Yours just doesn't know enough about it to understand that sometimes CF isn't quite so obvious.
Good luck.
Stacey
Symptoms, however, vary widely from patient to patient. One patient may have more problems with digestion, and another might have more lung involvement. Even two patients who have the exact same genetic mutations, can have completely different symptoms. CF can start out harsh, or it can start out mild. Since CF is a progressive disease, we can expect it to become harsher as the years pass. A patient who had only lung involvement as a child, can develop digestive issues as he/she ages. There are endless possibilities in how the disease might progress, but it will progress.
To fight for this test, which is what I think your ultimate goal is, you just have to keep demanding it. They thought there was reason to test for it with the sweat test, so it seems logical to me to finish what they started, and do the genetic test. I really think you need to find a CF doctor. Yours just doesn't know enough about it to understand that sometimes CF isn't quite so obvious.
Good luck.
Stacey
This is sort of tough to answer, because CF isn't at all black and white. I tend to want to say that there is only one KIND of CF, because CF is CF. You have to have two gene mutations to have the disease. You either have it or you don't. It's not like cancer, where there are many different types. Does this make sense?
Symptoms, however, vary widely from patient to patient. One patient may have more problems with digestion, and another might have more lung involvement. Even two patients who have the exact same genetic mutations, can have completely different symptoms. CF can start out harsh, or it can start out mild. Since CF is a progressive disease, we can expect it to become harsher as the years pass. A patient who had only lung involvement as a child, can develop digestive issues as he/she ages. There are endless possibilities in how the disease might progress, but it will progress.
To fight for this test, which is what I think your ultimate goal is, you just have to keep demanding it. They thought there was reason to test for it with the sweat test, so it seems logical to me to finish what they started, and do the genetic test. I really think you need to find a CF doctor. Yours just doesn't know enough about it to understand that sometimes CF isn't quite so obvious.
Good luck.
Stacey
Symptoms, however, vary widely from patient to patient. One patient may have more problems with digestion, and another might have more lung involvement. Even two patients who have the exact same genetic mutations, can have completely different symptoms. CF can start out harsh, or it can start out mild. Since CF is a progressive disease, we can expect it to become harsher as the years pass. A patient who had only lung involvement as a child, can develop digestive issues as he/she ages. There are endless possibilities in how the disease might progress, but it will progress.
To fight for this test, which is what I think your ultimate goal is, you just have to keep demanding it. They thought there was reason to test for it with the sweat test, so it seems logical to me to finish what they started, and do the genetic test. I really think you need to find a CF doctor. Yours just doesn't know enough about it to understand that sometimes CF isn't quite so obvious.
Good luck.
Stacey
This is sort of tough to answer, because CF isn't at all black and white. I tend to want to say that there is only one KIND of CF, because CF is CF. You have to have two gene mutations to have the disease. You either have it or you don't. It's not like cancer, where there are many different types. Does this make sense?
<br />
<br />Symptoms, however, vary widely from patient to patient. One patient may have more problems with digestion, and another might have more lung involvement. Even two patients who have the exact same genetic mutations, can have completely different symptoms. CF can start out harsh, or it can start out mild. Since CF is a progressive disease, we can expect it to become harsher as the years pass. A patient who had only lung involvement as a child, can develop digestive issues as he/she ages. There are endless possibilities in how the disease might progress, but it will progress.
<br />
<br />To fight for this test, which is what I think your ultimate goal is, you just have to keep demanding it. They thought there was reason to test for it with the sweat test, so it seems logical to me to finish what they started, and do the genetic test. I really think you need to find a CF doctor. Yours just doesn't know enough about it to understand that sometimes CF isn't quite so obvious.
<br />
<br />Good luck.
<br />
<br />Stacey
<br />
<br />Symptoms, however, vary widely from patient to patient. One patient may have more problems with digestion, and another might have more lung involvement. Even two patients who have the exact same genetic mutations, can have completely different symptoms. CF can start out harsh, or it can start out mild. Since CF is a progressive disease, we can expect it to become harsher as the years pass. A patient who had only lung involvement as a child, can develop digestive issues as he/she ages. There are endless possibilities in how the disease might progress, but it will progress.
<br />
<br />To fight for this test, which is what I think your ultimate goal is, you just have to keep demanding it. They thought there was reason to test for it with the sweat test, so it seems logical to me to finish what they started, and do the genetic test. I really think you need to find a CF doctor. Yours just doesn't know enough about it to understand that sometimes CF isn't quite so obvious.
<br />
<br />Good luck.
<br />
<br />Stacey