Good New / Bad News

N

Nervous1

New member
Hi Everybody,

Thanks for the suggestion of a sperm count, but I am a woman. I guess that's one minor detail that I never mentioned anywhere. <img src="i/expressions/face-icon-small-smile.gif" border="0">

My sinusitis is under control thankfully. Nasal steriods keep it under that way most of the time. I get 1-2 sinus and/or chest infections a year requiring antibiotics and 1 or 2 more heavy colds that I make it through without requiring antibiotics. The rest of the time is just the usual ups and downs with intermittent unexplained SOB, chest discomfort/pain, and a general miserable feeling.

Luckily I have been feeling better the last couple of days. Maybe it's from all your help and concern!

Have a good day everyone!
 
N

Nervous1

New member
Hi Everybody,

Thanks for the suggestion of a sperm count, but I am a woman. I guess that's one minor detail that I never mentioned anywhere. <img src="i/expressions/face-icon-small-smile.gif" border="0">

My sinusitis is under control thankfully. Nasal steriods keep it under that way most of the time. I get 1-2 sinus and/or chest infections a year requiring antibiotics and 1 or 2 more heavy colds that I make it through without requiring antibiotics. The rest of the time is just the usual ups and downs with intermittent unexplained SOB, chest discomfort/pain, and a general miserable feeling.

Luckily I have been feeling better the last couple of days. Maybe it's from all your help and concern!

Have a good day everyone!
 
N

Nervous1

New member
Hi Everybody,

Thanks for the suggestion of a sperm count, but I am a woman. I guess that's one minor detail that I never mentioned anywhere. <img src="i/expressions/face-icon-small-smile.gif" border="0">

My sinusitis is under control thankfully. Nasal steriods keep it under that way most of the time. I get 1-2 sinus and/or chest infections a year requiring antibiotics and 1 or 2 more heavy colds that I make it through without requiring antibiotics. The rest of the time is just the usual ups and downs with intermittent unexplained SOB, chest discomfort/pain, and a general miserable feeling.

Luckily I have been feeling better the last couple of days. Maybe it's from all your help and concern!

Have a good day everyone!
 
N

Nervous1

New member
Hi Everybody,

Thanks for the suggestion of a sperm count, but I am a woman. I guess that's one minor detail that I never mentioned anywhere. <img src="i/expressions/face-icon-small-smile.gif" border="0">

My sinusitis is under control thankfully. Nasal steriods keep it under that way most of the time. I get 1-2 sinus and/or chest infections a year requiring antibiotics and 1 or 2 more heavy colds that I make it through without requiring antibiotics. The rest of the time is just the usual ups and downs with intermittent unexplained SOB, chest discomfort/pain, and a general miserable feeling.

Luckily I have been feeling better the last couple of days. Maybe it's from all your help and concern!

Have a good day everyone!
 
N

Nervous1

New member
Hi Everybody,

Thanks for the suggestion of a sperm count, but I am a woman. I guess that's one minor detail that I never mentioned anywhere. <img src="i/expressions/face-icon-small-smile.gif" border="0">

My sinusitis is under control thankfully. Nasal steriods keep it under that way most of the time. I get 1-2 sinus and/or chest infections a year requiring antibiotics and 1 or 2 more heavy colds that I make it through without requiring antibiotics. The rest of the time is just the usual ups and downs with intermittent unexplained SOB, chest discomfort/pain, and a general miserable feeling.

Luckily I have been feeling better the last couple of days. Maybe it's from all your help and concern!

Have a good day everyone!
 
C

concernedmom

New member
Nervous1, I disagree with your doctor about testing for PCD. Patients with PCD are treated medically very similiarly to those with CF since the lung affects can be very similiar. JMHO. I also think it's worth saving up for the Ambry test and paying out of pocket. Even if you can only save $20/month, you'll still end up with enough for the test in less than a year.
 
C

concernedmom

New member
Nervous1, I disagree with your doctor about testing for PCD. Patients with PCD are treated medically very similiarly to those with CF since the lung affects can be very similiar. JMHO. I also think it's worth saving up for the Ambry test and paying out of pocket. Even if you can only save $20/month, you'll still end up with enough for the test in less than a year.
 
C

concernedmom

New member
Nervous1, I disagree with your doctor about testing for PCD. Patients with PCD are treated medically very similiarly to those with CF since the lung affects can be very similiar. JMHO. I also think it's worth saving up for the Ambry test and paying out of pocket. Even if you can only save $20/month, you'll still end up with enough for the test in less than a year.
 
C

concernedmom

New member
Nervous1, I disagree with your doctor about testing for PCD. Patients with PCD are treated medically very similiarly to those with CF since the lung affects can be very similiar. JMHO. I also think it's worth saving up for the Ambry test and paying out of pocket. Even if you can only save $20/month, you'll still end up with enough for the test in less than a year.
 
C

concernedmom

New member
Nervous1, I disagree with your doctor about testing for PCD. Patients with PCD are treated medically very similiarly to those with CF since the lung affects can be very similiar. JMHO. I also think it's worth saving up for the Ambry test and paying out of pocket. Even if you can only save $20/month, you'll still end up with enough for the test in less than a year.
 
N

Nervous1

New member
Good point concernedmom about putting away a little at a time to save up for the Ambry test.

I guess in part I am really tired of dealing with the docs and getting nowhere with the diagnosis. Mentally I don't know how I would deal with a negative result on the Ambry. If it were positive I guess I will have "won" and will finally be able to convince the health system to treat me for CF. But if they find only one mutation, or even none, then where am I? Will I have ruled out CF? The same thoughts are running through my head regarding PCD.

As it is my pulmonologist is starting to go in crazy directions like fibromyalgia, which was already ruled out by a rheumatologist. I don't have any of the symptoms of fibromyalgia, and it's a disease that there are no tests that can diagnose it and no effective treatment. I told the pulmonologist that in my humble opinion it's an easy out for him, a way to give my disease a name and "solve" the mystery with something that can't be proven. His answer was "I can't argue with that." I at least have to give him credit for honesty.

Anyway, I guess in part I am putting off paying for the Ambry out of my pocket because if it's negative I will be back to square 1. Perhaps it's not the most constructive approach to the physical aspects, but mentally I just can't deal with the tension of more testing right now. At some point that will change though and I'll get up the nerve to do it.

Sorry for the long rant, and thanks for your comments.
 
N

Nervous1

New member
Good point concernedmom about putting away a little at a time to save up for the Ambry test.

I guess in part I am really tired of dealing with the docs and getting nowhere with the diagnosis. Mentally I don't know how I would deal with a negative result on the Ambry. If it were positive I guess I will have "won" and will finally be able to convince the health system to treat me for CF. But if they find only one mutation, or even none, then where am I? Will I have ruled out CF? The same thoughts are running through my head regarding PCD.

As it is my pulmonologist is starting to go in crazy directions like fibromyalgia, which was already ruled out by a rheumatologist. I don't have any of the symptoms of fibromyalgia, and it's a disease that there are no tests that can diagnose it and no effective treatment. I told the pulmonologist that in my humble opinion it's an easy out for him, a way to give my disease a name and "solve" the mystery with something that can't be proven. His answer was "I can't argue with that." I at least have to give him credit for honesty.

Anyway, I guess in part I am putting off paying for the Ambry out of my pocket because if it's negative I will be back to square 1. Perhaps it's not the most constructive approach to the physical aspects, but mentally I just can't deal with the tension of more testing right now. At some point that will change though and I'll get up the nerve to do it.

Sorry for the long rant, and thanks for your comments.
 
N

Nervous1

New member
Good point concernedmom about putting away a little at a time to save up for the Ambry test.

I guess in part I am really tired of dealing with the docs and getting nowhere with the diagnosis. Mentally I don't know how I would deal with a negative result on the Ambry. If it were positive I guess I will have "won" and will finally be able to convince the health system to treat me for CF. But if they find only one mutation, or even none, then where am I? Will I have ruled out CF? The same thoughts are running through my head regarding PCD.

As it is my pulmonologist is starting to go in crazy directions like fibromyalgia, which was already ruled out by a rheumatologist. I don't have any of the symptoms of fibromyalgia, and it's a disease that there are no tests that can diagnose it and no effective treatment. I told the pulmonologist that in my humble opinion it's an easy out for him, a way to give my disease a name and "solve" the mystery with something that can't be proven. His answer was "I can't argue with that." I at least have to give him credit for honesty.

Anyway, I guess in part I am putting off paying for the Ambry out of my pocket because if it's negative I will be back to square 1. Perhaps it's not the most constructive approach to the physical aspects, but mentally I just can't deal with the tension of more testing right now. At some point that will change though and I'll get up the nerve to do it.

Sorry for the long rant, and thanks for your comments.
 
N

Nervous1

New member
Good point concernedmom about putting away a little at a time to save up for the Ambry test.

I guess in part I am really tired of dealing with the docs and getting nowhere with the diagnosis. Mentally I don't know how I would deal with a negative result on the Ambry. If it were positive I guess I will have "won" and will finally be able to convince the health system to treat me for CF. But if they find only one mutation, or even none, then where am I? Will I have ruled out CF? The same thoughts are running through my head regarding PCD.

As it is my pulmonologist is starting to go in crazy directions like fibromyalgia, which was already ruled out by a rheumatologist. I don't have any of the symptoms of fibromyalgia, and it's a disease that there are no tests that can diagnose it and no effective treatment. I told the pulmonologist that in my humble opinion it's an easy out for him, a way to give my disease a name and "solve" the mystery with something that can't be proven. His answer was "I can't argue with that." I at least have to give him credit for honesty.

Anyway, I guess in part I am putting off paying for the Ambry out of my pocket because if it's negative I will be back to square 1. Perhaps it's not the most constructive approach to the physical aspects, but mentally I just can't deal with the tension of more testing right now. At some point that will change though and I'll get up the nerve to do it.

Sorry for the long rant, and thanks for your comments.
 
N

Nervous1

New member
Good point concernedmom about putting away a little at a time to save up for the Ambry test.

I guess in part I am really tired of dealing with the docs and getting nowhere with the diagnosis. Mentally I don't know how I would deal with a negative result on the Ambry. If it were positive I guess I will have "won" and will finally be able to convince the health system to treat me for CF. But if they find only one mutation, or even none, then where am I? Will I have ruled out CF? The same thoughts are running through my head regarding PCD.

As it is my pulmonologist is starting to go in crazy directions like fibromyalgia, which was already ruled out by a rheumatologist. I don't have any of the symptoms of fibromyalgia, and it's a disease that there are no tests that can diagnose it and no effective treatment. I told the pulmonologist that in my humble opinion it's an easy out for him, a way to give my disease a name and "solve" the mystery with something that can't be proven. His answer was "I can't argue with that." I at least have to give him credit for honesty.

Anyway, I guess in part I am putting off paying for the Ambry out of my pocket because if it's negative I will be back to square 1. Perhaps it's not the most constructive approach to the physical aspects, but mentally I just can't deal with the tension of more testing right now. At some point that will change though and I'll get up the nerve to do it.

Sorry for the long rant, and thanks for your comments.
 
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