Unsure need advice

C

chrissyd

New member
<div class="FTQUOTE"><begin quote>I know that lung problems are a big symptom of cf and lacking the enzyme to break down food but what are the other symptoms? None are too small. </end quote></div>

I can tell you about my childhood symptoms. When I was a little girl, my mom said that I would sweat alot, I had multiple ear infections, sinusitis, and asthma. I also had many many cases of pharyngitis.
I'm 31 and my CF Dr calls me her "chubby cfer", I don't have a problem gaining weight but I do have issues absorbing vitamins.

I wasn't diagnosed until later in life; I was 21. My symptoms were not considered severe enough as a child to warrant testing.

I hope you get answers soon; I know how hard it was for my parents to know that I was sick but not know why...

<img src="i/expressions/rose.gif" border="0">
Chrissy
 
C

chrissyd

New member
<div class="FTQUOTE"><begin quote>I know that lung problems are a big symptom of cf and lacking the enzyme to break down food but what are the other symptoms? None are too small. </end quote></div>

I can tell you about my childhood symptoms. When I was a little girl, my mom said that I would sweat alot, I had multiple ear infections, sinusitis, and asthma. I also had many many cases of pharyngitis.
I'm 31 and my CF Dr calls me her "chubby cfer", I don't have a problem gaining weight but I do have issues absorbing vitamins.

I wasn't diagnosed until later in life; I was 21. My symptoms were not considered severe enough as a child to warrant testing.

I hope you get answers soon; I know how hard it was for my parents to know that I was sick but not know why...

<img src="i/expressions/rose.gif" border="0">
Chrissy
 
C

chrissyd

New member
<div class="FTQUOTE"><begin quote>I know that lung problems are a big symptom of cf and lacking the enzyme to break down food but what are the other symptoms? None are too small. </end quote></div>

I can tell you about my childhood symptoms. When I was a little girl, my mom said that I would sweat alot, I had multiple ear infections, sinusitis, and asthma. I also had many many cases of pharyngitis.
I'm 31 and my CF Dr calls me her "chubby cfer", I don't have a problem gaining weight but I do have issues absorbing vitamins.

I wasn't diagnosed until later in life; I was 21. My symptoms were not considered severe enough as a child to warrant testing.

I hope you get answers soon; I know how hard it was for my parents to know that I was sick but not know why...

<img src="i/expressions/rose.gif" border="0">
Chrissy
 
C

chrissyd

New member
<div class="FTQUOTE"><begin quote>I know that lung problems are a big symptom of cf and lacking the enzyme to break down food but what are the other symptoms? None are too small. </end quote>

I can tell you about my childhood symptoms. When I was a little girl, my mom said that I would sweat alot, I had multiple ear infections, sinusitis, and asthma. I also had many many cases of pharyngitis.
I'm 31 and my CF Dr calls me her "chubby cfer", I don't have a problem gaining weight but I do have issues absorbing vitamins.

I wasn't diagnosed until later in life; I was 21. My symptoms were not considered severe enough as a child to warrant testing.

I hope you get answers soon; I know how hard it was for my parents to know that I was sick but not know why...

<img src="i/expressions/rose.gif" border="0">
Chrissy
 
C

chrissyd

New member
<div class="FTQUOTE"><begin quote>I know that lung problems are a big symptom of cf and lacking the enzyme to break down food but what are the other symptoms? None are too small. </end quote>
<br />
<br />I can tell you about my childhood symptoms. When I was a little girl, my mom said that I would sweat alot, I had multiple ear infections, sinusitis, and asthma. I also had many many cases of pharyngitis.
<br />I'm 31 and my CF Dr calls me her "chubby cfer", I don't have a problem gaining weight but I do have issues absorbing vitamins.
<br />
<br />I wasn't diagnosed until later in life; I was 21. My symptoms were not considered severe enough as a child to warrant testing.
<br />
<br />I hope you get answers soon; I know how hard it was for my parents to know that I was sick but not know why...
<br />
<br /><img src="i/expressions/rose.gif" border="0">
<br />Chrissy
 
J

jaazavala

New member
I talked to Maritza's doctor today and she will not get the genetic testing done. She said that they dont do that when they have a normal sweat test. I told her that I have heard a lot about people having normal sweat numbers and still have cf. She tried to tell me that it was propbably because they were not teseted at a certified CF center and we were. I do not belive that. She just wants me to wait untill we go to the pulmonologist but her appt isnt until July 2nd. We have already been waiting for 2 weeks and now we have to wait another 10. I cant belive that they make a baby that is sooo sick wait that long to see the specialist. The least they could do would be to have the genetic testing done in the mean time!! I am going to call straigt to the pulmonologist's office tomorrow and see if we might be able to get him to do the genetic testing befor we come in. The worst part is waiting and not knowing and that is what you have to do the most it seems like.
 
J

jaazavala

New member
I talked to Maritza's doctor today and she will not get the genetic testing done. She said that they dont do that when they have a normal sweat test. I told her that I have heard a lot about people having normal sweat numbers and still have cf. She tried to tell me that it was propbably because they were not teseted at a certified CF center and we were. I do not belive that. She just wants me to wait untill we go to the pulmonologist but her appt isnt until July 2nd. We have already been waiting for 2 weeks and now we have to wait another 10. I cant belive that they make a baby that is sooo sick wait that long to see the specialist. The least they could do would be to have the genetic testing done in the mean time!! I am going to call straigt to the pulmonologist's office tomorrow and see if we might be able to get him to do the genetic testing befor we come in. The worst part is waiting and not knowing and that is what you have to do the most it seems like.
 
J

jaazavala

New member
I talked to Maritza's doctor today and she will not get the genetic testing done. She said that they dont do that when they have a normal sweat test. I told her that I have heard a lot about people having normal sweat numbers and still have cf. She tried to tell me that it was propbably because they were not teseted at a certified CF center and we were. I do not belive that. She just wants me to wait untill we go to the pulmonologist but her appt isnt until July 2nd. We have already been waiting for 2 weeks and now we have to wait another 10. I cant belive that they make a baby that is sooo sick wait that long to see the specialist. The least they could do would be to have the genetic testing done in the mean time!! I am going to call straigt to the pulmonologist's office tomorrow and see if we might be able to get him to do the genetic testing befor we come in. The worst part is waiting and not knowing and that is what you have to do the most it seems like.
 
J

jaazavala

New member
I talked to Maritza's doctor today and she will not get the genetic testing done. She said that they dont do that when they have a normal sweat test. I told her that I have heard a lot about people having normal sweat numbers and still have cf. She tried to tell me that it was propbably because they were not teseted at a certified CF center and we were. I do not belive that. She just wants me to wait untill we go to the pulmonologist but her appt isnt until July 2nd. We have already been waiting for 2 weeks and now we have to wait another 10. I cant belive that they make a baby that is sooo sick wait that long to see the specialist. The least they could do would be to have the genetic testing done in the mean time!! I am going to call straigt to the pulmonologist's office tomorrow and see if we might be able to get him to do the genetic testing befor we come in. The worst part is waiting and not knowing and that is what you have to do the most it seems like.
 
J

jaazavala

New member
I talked to Maritza's doctor today and she will not get the genetic testing done. She said that they dont do that when they have a normal sweat test. I told her that I have heard a lot about people having normal sweat numbers and still have cf. She tried to tell me that it was propbably because they were not teseted at a certified CF center and we were. I do not belive that. She just wants me to wait untill we go to the pulmonologist but her appt isnt until July 2nd. We have already been waiting for 2 weeks and now we have to wait another 10. I cant belive that they make a baby that is sooo sick wait that long to see the specialist. The least they could do would be to have the genetic testing done in the mean time!! I am going to call straigt to the pulmonologist's office tomorrow and see if we might be able to get him to do the genetic testing befor we come in. The worst part is waiting and not knowing and that is what you have to do the most it seems like.
 
J

jaazavala

New member
I just wanted to say that I did call Maritza's pulmonologist office and they said that they would not do the test either befor seeing the doc. I asked them to put a note on her file for the doc to see if he would look at it and maybe order the test before hand. I am sure he will not because her sweat test was only a 10. I also had them put me on the canceled apt list. They said they will call me if something sooner comes up.
 
J

jaazavala

New member
I just wanted to say that I did call Maritza's pulmonologist office and they said that they would not do the test either befor seeing the doc. I asked them to put a note on her file for the doc to see if he would look at it and maybe order the test before hand. I am sure he will not because her sweat test was only a 10. I also had them put me on the canceled apt list. They said they will call me if something sooner comes up.
 
J

jaazavala

New member
I just wanted to say that I did call Maritza's pulmonologist office and they said that they would not do the test either befor seeing the doc. I asked them to put a note on her file for the doc to see if he would look at it and maybe order the test before hand. I am sure he will not because her sweat test was only a 10. I also had them put me on the canceled apt list. They said they will call me if something sooner comes up.
 
J

jaazavala

New member
I just wanted to say that I did call Maritza's pulmonologist office and they said that they would not do the test either befor seeing the doc. I asked them to put a note on her file for the doc to see if he would look at it and maybe order the test before hand. I am sure he will not because her sweat test was only a 10. I also had them put me on the canceled apt list. They said they will call me if something sooner comes up.
 
J

jaazavala

New member
I just wanted to say that I did call Maritza's pulmonologist office and they said that they would not do the test either befor seeing the doc. I asked them to put a note on her file for the doc to see if he would look at it and maybe order the test before hand. I am sure he will not because her sweat test was only a 10. I also had them put me on the canceled apt list. They said they will call me if something sooner comes up.
 
A

Alyssa

New member
Augh ! How frustrating! Hang in there.. keep asking for genetic testing -- sooner or later someone will give into you :)

As far as you symptom list -- yes somethings are consistent with what people with CF have seen.

As far as the sweat test number being a symptom .. it's more a measure of how the chloride channels are function or not functioning.... how much function and why is a direct result of the type of genes that the person has. I don't have time to get you the specifics right now, but there are several different classifications of genes, some types allow the chloride to travel to the top, but do not open the channel, others cannot travel up, others work all the way but not very well etc. Some people just have better function based on what is causing the channel to misfunction.... if it is functioning near normal, you will get a near normal result.... it really doesn't have too much of a bearing on what else might be going wrong in the body, or accurately diagnose CF.

Yes, all symptoms are completely independent from one another and some people have more symptoms than others...and yes some people might have only lung and no GI problems, some people have liver problems too... or any imaginable combination of sinus, GI, Liver, Pancreas etc.

Keep pushing for genetic testing... if need be just wait it out until your appointment...you are very smart to not accept what the first doctor said.
 
A

Alyssa

New member
Augh ! How frustrating! Hang in there.. keep asking for genetic testing -- sooner or later someone will give into you :)

As far as you symptom list -- yes somethings are consistent with what people with CF have seen.

As far as the sweat test number being a symptom .. it's more a measure of how the chloride channels are function or not functioning.... how much function and why is a direct result of the type of genes that the person has. I don't have time to get you the specifics right now, but there are several different classifications of genes, some types allow the chloride to travel to the top, but do not open the channel, others cannot travel up, others work all the way but not very well etc. Some people just have better function based on what is causing the channel to misfunction.... if it is functioning near normal, you will get a near normal result.... it really doesn't have too much of a bearing on what else might be going wrong in the body, or accurately diagnose CF.

Yes, all symptoms are completely independent from one another and some people have more symptoms than others...and yes some people might have only lung and no GI problems, some people have liver problems too... or any imaginable combination of sinus, GI, Liver, Pancreas etc.

Keep pushing for genetic testing... if need be just wait it out until your appointment...you are very smart to not accept what the first doctor said.
 
A

Alyssa

New member
Augh ! How frustrating! Hang in there.. keep asking for genetic testing -- sooner or later someone will give into you :)

As far as you symptom list -- yes somethings are consistent with what people with CF have seen.

As far as the sweat test number being a symptom .. it's more a measure of how the chloride channels are function or not functioning.... how much function and why is a direct result of the type of genes that the person has. I don't have time to get you the specifics right now, but there are several different classifications of genes, some types allow the chloride to travel to the top, but do not open the channel, others cannot travel up, others work all the way but not very well etc. Some people just have better function based on what is causing the channel to misfunction.... if it is functioning near normal, you will get a near normal result.... it really doesn't have too much of a bearing on what else might be going wrong in the body, or accurately diagnose CF.

Yes, all symptoms are completely independent from one another and some people have more symptoms than others...and yes some people might have only lung and no GI problems, some people have liver problems too... or any imaginable combination of sinus, GI, Liver, Pancreas etc.

Keep pushing for genetic testing... if need be just wait it out until your appointment...you are very smart to not accept what the first doctor said.
 
A

Alyssa

New member
Augh ! How frustrating! Hang in there.. keep asking for genetic testing -- sooner or later someone will give into you :)

As far as you symptom list -- yes somethings are consistent with what people with CF have seen.

As far as the sweat test number being a symptom .. it's more a measure of how the chloride channels are function or not functioning.... how much function and why is a direct result of the type of genes that the person has. I don't have time to get you the specifics right now, but there are several different classifications of genes, some types allow the chloride to travel to the top, but do not open the channel, others cannot travel up, others work all the way but not very well etc. Some people just have better function based on what is causing the channel to misfunction.... if it is functioning near normal, you will get a near normal result.... it really doesn't have too much of a bearing on what else might be going wrong in the body, or accurately diagnose CF.

Yes, all symptoms are completely independent from one another and some people have more symptoms than others...and yes some people might have only lung and no GI problems, some people have liver problems too... or any imaginable combination of sinus, GI, Liver, Pancreas etc.

Keep pushing for genetic testing... if need be just wait it out until your appointment...you are very smart to not accept what the first doctor said.
 
A

Alyssa

New member
Augh ! How frustrating! Hang in there.. keep asking for genetic testing -- sooner or later someone will give into you :)
<br />
<br />As far as you symptom list -- yes somethings are consistent with what people with CF have seen.
<br />
<br />As far as the sweat test number being a symptom .. it's more a measure of how the chloride channels are function or not functioning.... how much function and why is a direct result of the type of genes that the person has. I don't have time to get you the specifics right now, but there are several different classifications of genes, some types allow the chloride to travel to the top, but do not open the channel, others cannot travel up, others work all the way but not very well etc. Some people just have better function based on what is causing the channel to misfunction.... if it is functioning near normal, you will get a near normal result.... it really doesn't have too much of a bearing on what else might be going wrong in the body, or accurately diagnose CF.
<br />
<br />Yes, all symptoms are completely independent from one another and some people have more symptoms than others...and yes some people might have only lung and no GI problems, some people have liver problems too... or any imaginable combination of sinus, GI, Liver, Pancreas etc.
<br />
<br />Keep pushing for genetic testing... if need be just wait it out until your appointment...you are very smart to not accept what the first doctor said.
 
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