Question about reflux & late diagnosis

[smccanl]

Hi Everyone,

I posted here a while ago about being diagnosed with a "mild variant" of CF (I know, I know, the mild thing is a hot topic), and then when my doctor passed my records on to the CF clinic they said that my second mutation/variant doesn't always cause disease, so they would need to investigate further. I'm going in for a CT of my lungs in a couple of weeks, and until then I'm just in the dark, obsessing.

My son had a doctor's appt to day and I told our ped. my story and she said that my chronic cough was a lot more likely to be reflux or sleep apnea than CF. I'm wondering if any of you who were diagnosed late got checked out for those conditions? She said silent reflux could even worsen my sinus issues (I have no idea how) and she was amazed no one had investigated it. I don't have any other symptoms of reflux.

As I said, I'm just hanging out, obsessing, with no doctor's appointment for a few weeks. Now I'm wondering if I have reflux. If anyone knows if you can tell the difference from your symptoms, please tell me!

Also, I've seen a few posts about reflux on this board. Is that a common CF issue? (In which case, wouldn't it be sort of a chicken and egg question?)

Thanks for letting me babble on with this rather ridiculous question.

Best wishes,
Sarah

 

[smccanl]

Hi Everyone,

I posted here a while ago about being diagnosed with a "mild variant" of CF (I know, I know, the mild thing is a hot topic), and then when my doctor passed my records on to the CF clinic they said that my second mutation/variant doesn't always cause disease, so they would need to investigate further. I'm going in for a CT of my lungs in a couple of weeks, and until then I'm just in the dark, obsessing.

My son had a doctor's appt to day and I told our ped. my story and she said that my chronic cough was a lot more likely to be reflux or sleep apnea than CF. I'm wondering if any of you who were diagnosed late got checked out for those conditions? She said silent reflux could even worsen my sinus issues (I have no idea how) and she was amazed no one had investigated it. I don't have any other symptoms of reflux.

As I said, I'm just hanging out, obsessing, with no doctor's appointment for a few weeks. Now I'm wondering if I have reflux. If anyone knows if you can tell the difference from your symptoms, please tell me!

Also, I've seen a few posts about reflux on this board. Is that a common CF issue? (In which case, wouldn't it be sort of a chicken and egg question?)

Thanks for letting me babble on with this rather ridiculous question.

Best wishes,
Sarah

 

[smccanl]

Hi Everyone,

I posted here a while ago about being diagnosed with a "mild variant" of CF (I know, I know, the mild thing is a hot topic), and then when my doctor passed my records on to the CF clinic they said that my second mutation/variant doesn't always cause disease, so they would need to investigate further. I'm going in for a CT of my lungs in a couple of weeks, and until then I'm just in the dark, obsessing.

My son had a doctor's appt to day and I told our ped. my story and she said that my chronic cough was a lot more likely to be reflux or sleep apnea than CF. I'm wondering if any of you who were diagnosed late got checked out for those conditions? She said silent reflux could even worsen my sinus issues (I have no idea how) and she was amazed no one had investigated it. I don't have any other symptoms of reflux.

As I said, I'm just hanging out, obsessing, with no doctor's appointment for a few weeks. Now I'm wondering if I have reflux. If anyone knows if you can tell the difference from your symptoms, please tell me!

Also, I've seen a few posts about reflux on this board. Is that a common CF issue? (In which case, wouldn't it be sort of a chicken and egg question?)

Thanks for letting me babble on with this rather ridiculous question.

Best wishes,
Sarah

 

[smccanl]

Hi Everyone,

I posted here a while ago about being diagnosed with a "mild variant" of CF (I know, I know, the mild thing is a hot topic), and then when my doctor passed my records on to the CF clinic they said that my second mutation/variant doesn't always cause disease, so they would need to investigate further. I'm going in for a CT of my lungs in a couple of weeks, and until then I'm just in the dark, obsessing.

My son had a doctor's appt to day and I told our ped. my story and she said that my chronic cough was a lot more likely to be reflux or sleep apnea than CF. I'm wondering if any of you who were diagnosed late got checked out for those conditions? She said silent reflux could even worsen my sinus issues (I have no idea how) and she was amazed no one had investigated it. I don't have any other symptoms of reflux.

As I said, I'm just hanging out, obsessing, with no doctor's appointment for a few weeks. Now I'm wondering if I have reflux. If anyone knows if you can tell the difference from your symptoms, please tell me!

Also, I've seen a few posts about reflux on this board. Is that a common CF issue? (In which case, wouldn't it be sort of a chicken and egg question?)

Thanks for letting me babble on with this rather ridiculous question.

Best wishes,
Sarah

 

[smccanl]

Hi Everyone,
<br />
<br />I posted here a while ago about being diagnosed with a "mild variant" of CF (I know, I know, the mild thing is a hot topic), and then when my doctor passed my records on to the CF clinic they said that my second mutation/variant doesn't always cause disease, so they would need to investigate further. I'm going in for a CT of my lungs in a couple of weeks, and until then I'm just in the dark, obsessing.
<br />
<br />My son had a doctor's appt to day and I told our ped. my story and she said that my chronic cough was a lot more likely to be reflux or sleep apnea than CF. I'm wondering if any of you who were diagnosed late got checked out for those conditions? She said silent reflux could even worsen my sinus issues (I have no idea how) and she was amazed no one had investigated it. I don't have any other symptoms of reflux.
<br />
<br />As I said, I'm just hanging out, obsessing, with no doctor's appointment for a few weeks. Now I'm wondering if I have reflux. If anyone knows if you can tell the difference from your symptoms, please tell me!
<br />
<br />Also, I've seen a few posts about reflux on this board. Is that a common CF issue? (In which case, wouldn't it be sort of a chicken and egg question?)
<br />
<br />Thanks for letting me babble on with this rather ridiculous question.
<br />
<br />Best wishes,
<br />Sarah

 

[hopesiris]

I don't understand how it could be more likely those things than CF when your genetic test shows you have something that may be disease causing. I have acid reflux and I have a variant/mutation with a CF diagnosis. I know your pedi means well but I'm not sure you should take what was said very seriously until your CF clinic does more testing.

Do you cough up mucus at all? Do you hear it rattling when you cough? If you do cough it out, what color is it? I'm asking because colored mucus is a sign of infection.

 

[hopesiris]

I don't understand how it could be more likely those things than CF when your genetic test shows you have something that may be disease causing. I have acid reflux and I have a variant/mutation with a CF diagnosis. I know your pedi means well but I'm not sure you should take what was said very seriously until your CF clinic does more testing.

Do you cough up mucus at all? Do you hear it rattling when you cough? If you do cough it out, what color is it? I'm asking because colored mucus is a sign of infection.

 

[hopesiris]

I don't understand how it could be more likely those things than CF when your genetic test shows you have something that may be disease causing. I have acid reflux and I have a variant/mutation with a CF diagnosis. I know your pedi means well but I'm not sure you should take what was said very seriously until your CF clinic does more testing.

Do you cough up mucus at all? Do you hear it rattling when you cough? If you do cough it out, what color is it? I'm asking because colored mucus is a sign of infection.

 

[hopesiris]

I don't understand how it could be more likely those things than CF when your genetic test shows you have something that may be disease causing. I have acid reflux and I have a variant/mutation with a CF diagnosis. I know your pedi means well but I'm not sure you should take what was said very seriously until your CF clinic does more testing.

Do you cough up mucus at all? Do you hear it rattling when you cough? If you do cough it out, what color is it? I'm asking because colored mucus is a sign of infection.

 

[hopesiris]

I don't understand how it could be more likely those things than CF when your genetic test shows you have something that may be disease causing. I have acid reflux and I have a variant/mutation with a CF diagnosis. I know your pedi means well but I'm not sure you should take what was said very seriously until your CF clinic does more testing.
<br />
<br />Do you cough up mucus at all? Do you hear it rattling when you cough? If you do cough it out, what color is it? I'm asking because colored mucus is a sign of infection.

 

[smccanl]

My cough is sometimes productive, sometimes not. I often can feel something rattling in my chest, but no doctor has ever heard a thing on a stethoscope. (I've always had the luck of having a nice big productive cough just before they see me!) I don't wheeze. I do get short of breath, much more so when the cough is also worse. The mucus can be anywhere in the rainbow of phlegm <img src="i/expressions/face-icon-small-smile.gif" border="0">, but usually it's yellow, sometimes white. I don't cough up very much, most of my coughs are dry, but I always feel better when something does come up, so I wouldn't exactly call it a "dry cough" - know what I mean? When I get a flare-up of bronchitis it will be green. I've never had antibiotics for that because the doctor always says my chest sounds clear. It takes about 4 weeks to settle down on its own.

I know I should stop analyzing the alternate explanations. But man, it's about 2.5 weeks until I get into the clinic and the wait is driving me bonkers.

Thanks for the reply,
Sarah

 

[smccanl]

My cough is sometimes productive, sometimes not. I often can feel something rattling in my chest, but no doctor has ever heard a thing on a stethoscope. (I've always had the luck of having a nice big productive cough just before they see me!) I don't wheeze. I do get short of breath, much more so when the cough is also worse. The mucus can be anywhere in the rainbow of phlegm <img src="i/expressions/face-icon-small-smile.gif" border="0">, but usually it's yellow, sometimes white. I don't cough up very much, most of my coughs are dry, but I always feel better when something does come up, so I wouldn't exactly call it a "dry cough" - know what I mean? When I get a flare-up of bronchitis it will be green. I've never had antibiotics for that because the doctor always says my chest sounds clear. It takes about 4 weeks to settle down on its own.

I know I should stop analyzing the alternate explanations. But man, it's about 2.5 weeks until I get into the clinic and the wait is driving me bonkers.

Thanks for the reply,
Sarah

 

[smccanl]

My cough is sometimes productive, sometimes not. I often can feel something rattling in my chest, but no doctor has ever heard a thing on a stethoscope. (I've always had the luck of having a nice big productive cough just before they see me!) I don't wheeze. I do get short of breath, much more so when the cough is also worse. The mucus can be anywhere in the rainbow of phlegm <img src="i/expressions/face-icon-small-smile.gif" border="0">, but usually it's yellow, sometimes white. I don't cough up very much, most of my coughs are dry, but I always feel better when something does come up, so I wouldn't exactly call it a "dry cough" - know what I mean? When I get a flare-up of bronchitis it will be green. I've never had antibiotics for that because the doctor always says my chest sounds clear. It takes about 4 weeks to settle down on its own.

I know I should stop analyzing the alternate explanations. But man, it's about 2.5 weeks until I get into the clinic and the wait is driving me bonkers.

Thanks for the reply,
Sarah

 

[smccanl]

My cough is sometimes productive, sometimes not. I often can feel something rattling in my chest, but no doctor has ever heard a thing on a stethoscope. (I've always had the luck of having a nice big productive cough just before they see me!) I don't wheeze. I do get short of breath, much more so when the cough is also worse. The mucus can be anywhere in the rainbow of phlegm <img src="i/expressions/face-icon-small-smile.gif" border="0">, but usually it's yellow, sometimes white. I don't cough up very much, most of my coughs are dry, but I always feel better when something does come up, so I wouldn't exactly call it a "dry cough" - know what I mean? When I get a flare-up of bronchitis it will be green. I've never had antibiotics for that because the doctor always says my chest sounds clear. It takes about 4 weeks to settle down on its own.

I know I should stop analyzing the alternate explanations. But man, it's about 2.5 weeks until I get into the clinic and the wait is driving me bonkers.

Thanks for the reply,
Sarah

 

[smccanl]

My cough is sometimes productive, sometimes not. I often can feel something rattling in my chest, but no doctor has ever heard a thing on a stethoscope. (I've always had the luck of having a nice big productive cough just before they see me!) I don't wheeze. I do get short of breath, much more so when the cough is also worse. The mucus can be anywhere in the rainbow of phlegm <img src="i/expressions/face-icon-small-smile.gif" border="0">, but usually it's yellow, sometimes white. I don't cough up very much, most of my coughs are dry, but I always feel better when something does come up, so I wouldn't exactly call it a "dry cough" - know what I mean? When I get a flare-up of bronchitis it will be green. I've never had antibiotics for that because the doctor always says my chest sounds clear. It takes about 4 weeks to settle down on its own.
<br />
<br />I know I should stop analyzing the alternate explanations. But man, it's about 2.5 weeks until I get into the clinic and the wait is driving me bonkers.
<br />
<br />Thanks for the reply,
<br />Sarah

 

[Alyssa]

I'm no expert but I'd have to lean towards it being more CF related than reflux...to the best of my knowledge reflux will not cause mucus and especially not colored mucus. Your story also sounds similar to my daughter's medical history when she was misdiagnosed with "asthma with productive cough" for 8 years. She would have ugly colored mucus for 4-6 weeks that we never treated with antibiotics and usually cleared on it's own... that would never happen now and I feel VERY fortunate that she never got MRSA or PA during that time or else it could have caused her permanent damage due to lack of treatment.

I too would tend to think that the ped might be speaking out of their field of expertise. Unfortunately, I think you are stuck waiting it out The good news is that the CF docs are also experienced in dealing with reflux as well so you should be able to discuss it with them too. Try not to drive yourself too crazy Do keep in mind that you may not get any definite answers after you see the CF doc either... I mean, yes they will discuss things at length with you and will probably be able to give you more information than you have right now, but they will not be able to tell you specifics about what your future health problems may or may not evolve into. Even with the clear cut cases we never know for sure until it happens.

 

[Alyssa]

I'm no expert but I'd have to lean towards it being more CF related than reflux...to the best of my knowledge reflux will not cause mucus and especially not colored mucus. Your story also sounds similar to my daughter's medical history when she was misdiagnosed with "asthma with productive cough" for 8 years. She would have ugly colored mucus for 4-6 weeks that we never treated with antibiotics and usually cleared on it's own... that would never happen now and I feel VERY fortunate that she never got MRSA or PA during that time or else it could have caused her permanent damage due to lack of treatment.

I too would tend to think that the ped might be speaking out of their field of expertise. Unfortunately, I think you are stuck waiting it out The good news is that the CF docs are also experienced in dealing with reflux as well so you should be able to discuss it with them too. Try not to drive yourself too crazy Do keep in mind that you may not get any definite answers after you see the CF doc either... I mean, yes they will discuss things at length with you and will probably be able to give you more information than you have right now, but they will not be able to tell you specifics about what your future health problems may or may not evolve into. Even with the clear cut cases we never know for sure until it happens.

 

[Alyssa]

I'm no expert but I'd have to lean towards it being more CF related than reflux...to the best of my knowledge reflux will not cause mucus and especially not colored mucus. Your story also sounds similar to my daughter's medical history when she was misdiagnosed with "asthma with productive cough" for 8 years. She would have ugly colored mucus for 4-6 weeks that we never treated with antibiotics and usually cleared on it's own... that would never happen now and I feel VERY fortunate that she never got MRSA or PA during that time or else it could have caused her permanent damage due to lack of treatment.

I too would tend to think that the ped might be speaking out of their field of expertise. Unfortunately, I think you are stuck waiting it out The good news is that the CF docs are also experienced in dealing with reflux as well so you should be able to discuss it with them too. Try not to drive yourself too crazy Do keep in mind that you may not get any definite answers after you see the CF doc either... I mean, yes they will discuss things at length with you and will probably be able to give you more information than you have right now, but they will not be able to tell you specifics about what your future health problems may or may not evolve into. Even with the clear cut cases we never know for sure until it happens.

 

[Alyssa]

I'm no expert but I'd have to lean towards it being more CF related than reflux...to the best of my knowledge reflux will not cause mucus and especially not colored mucus. Your story also sounds similar to my daughter's medical history when she was misdiagnosed with "asthma with productive cough" for 8 years. She would have ugly colored mucus for 4-6 weeks that we never treated with antibiotics and usually cleared on it's own... that would never happen now and I feel VERY fortunate that she never got MRSA or PA during that time or else it could have caused her permanent damage due to lack of treatment.

I too would tend to think that the ped might be speaking out of their field of expertise. Unfortunately, I think you are stuck waiting it out The good news is that the CF docs are also experienced in dealing with reflux as well so you should be able to discuss it with them too. Try not to drive yourself too crazy Do keep in mind that you may not get any definite answers after you see the CF doc either... I mean, yes they will discuss things at length with you and will probably be able to give you more information than you have right now, but they will not be able to tell you specifics about what your future health problems may or may not evolve into. Even with the clear cut cases we never know for sure until it happens.

 

[Alyssa]

I'm no expert but I'd have to lean towards it being more CF related than reflux...to the best of my knowledge reflux will not cause mucus and especially not colored mucus. Your story also sounds similar to my daughter's medical history when she was misdiagnosed with "asthma with productive cough" for 8 years. She would have ugly colored mucus for 4-6 weeks that we never treated with antibiotics and usually cleared on it's own... that would never happen now and I feel VERY fortunate that she never got MRSA or PA during that time or else it could have caused her permanent damage due to lack of treatment.
<br />
<br />I too would tend to think that the ped might be speaking out of their field of expertise. Unfortunately, I think you are stuck waiting it out The good news is that the CF docs are also experienced in dealing with reflux as well so you should be able to discuss it with them too. Try not to drive yourself too crazy Do keep in mind that you may not get any definite answers after you see the CF doc either... I mean, yes they will discuss things at length with you and will probably be able to give you more information than you have right now, but they will not be able to tell you specifics about what your future health problems may or may not evolve into. Even with the clear cut cases we never know for sure until it happens.