Good New / Bad News

[mom2lillian]

Nervous 1-you do not have to receive anything different to be treated similarly to CF only if you are diagnosed symptomatically with CF does that come into play.

I dont think there is a way to get a fecal fat ordered unless they were trying to help you. Did you go to an accredited CF center for a workup or history/consult? Just curious. The only way I could think of would be if you suddenly lost alot weight or started having symptoms of digestive issues.

Also, could it be that tehre are so few people with your ethnicity dx outside of the 11panel because it is so hard for a doctor to consider it? Just a thought. I have heard it can be very hard for an african american to get diagnosed for just the same reason, they have to be showing blatant unmistakable symptoms or it is really hard to get a dx at times. Again, just a thought.

Good job on reading and being proactive.

you might not want to wait until you are sick to get a sputum check (unless that is the only time you are productive) as they might falsely assign blame to the illness in question for what you culture

 

[mom2lillian]

Nervous 1-you do not have to receive anything different to be treated similarly to CF only if you are diagnosed symptomatically with CF does that come into play.

I dont think there is a way to get a fecal fat ordered unless they were trying to help you. Did you go to an accredited CF center for a workup or history/consult? Just curious. The only way I could think of would be if you suddenly lost alot weight or started having symptoms of digestive issues.

Also, could it be that tehre are so few people with your ethnicity dx outside of the 11panel because it is so hard for a doctor to consider it? Just a thought. I have heard it can be very hard for an african american to get diagnosed for just the same reason, they have to be showing blatant unmistakable symptoms or it is really hard to get a dx at times. Again, just a thought.

Good job on reading and being proactive.

you might not want to wait until you are sick to get a sputum check (unless that is the only time you are productive) as they might falsely assign blame to the illness in question for what you culture

 

[mom2lillian]

Nervous 1-you do not have to receive anything different to be treated similarly to CF only if you are diagnosed symptomatically with CF does that come into play.

I dont think there is a way to get a fecal fat ordered unless they were trying to help you. Did you go to an accredited CF center for a workup or history/consult? Just curious. The only way I could think of would be if you suddenly lost alot weight or started having symptoms of digestive issues.

Also, could it be that tehre are so few people with your ethnicity dx outside of the 11panel because it is so hard for a doctor to consider it? Just a thought. I have heard it can be very hard for an african american to get diagnosed for just the same reason, they have to be showing blatant unmistakable symptoms or it is really hard to get a dx at times. Again, just a thought.

Good job on reading and being proactive.

you might not want to wait until you are sick to get a sputum check (unless that is the only time you are productive) as they might falsely assign blame to the illness in question for what you culture

 

[mom2lillian]

Nervous 1-you do not have to receive anything different to be treated similarly to CF only if you are diagnosed symptomatically with CF does that come into play.

I dont think there is a way to get a fecal fat ordered unless they were trying to help you. Did you go to an accredited CF center for a workup or history/consult? Just curious. The only way I could think of would be if you suddenly lost alot weight or started having symptoms of digestive issues.

Also, could it be that tehre are so few people with your ethnicity dx outside of the 11panel because it is so hard for a doctor to consider it? Just a thought. I have heard it can be very hard for an african american to get diagnosed for just the same reason, they have to be showing blatant unmistakable symptoms or it is really hard to get a dx at times. Again, just a thought.

Good job on reading and being proactive.

you might not want to wait until you are sick to get a sputum check (unless that is the only time you are productive) as they might falsely assign blame to the illness in question for what you culture

 

[mom2lillian]

Nervous 1-you do not have to receive anything different to be treated similarly to CF only if you are diagnosed symptomatically with CF does that come into play.

I dont think there is a way to get a fecal fat ordered unless they were trying to help you. Did you go to an accredited CF center for a workup or history/consult? Just curious. The only way I could think of would be if you suddenly lost alot weight or started having symptoms of digestive issues.

Also, could it be that tehre are so few people with your ethnicity dx outside of the 11panel because it is so hard for a doctor to consider it? Just a thought. I have heard it can be very hard for an african american to get diagnosed for just the same reason, they have to be showing blatant unmistakable symptoms or it is really hard to get a dx at times. Again, just a thought.

Good job on reading and being proactive.

you might not want to wait until you are sick to get a sputum check (unless that is the only time you are productive) as they might falsely assign blame to the illness in question for what you culture

 

[rvm1212]

HI nervous1

I don´t know if you are a man or a woman. If a man you could ask for an spermiogram. 99% of man with cf are azoospermic. My boyfriend was diagnosed this year at 35 with cf, and that is how we were able to get the full cf panel done. An spermiogram would also rule out primery cillia dischinesia (I´m not sure if traslate this right to english), this illness could also mimic cf symptons.

 

[rvm1212]

HI nervous1

I don´t know if you are a man or a woman. If a man you could ask for an spermiogram. 99% of man with cf are azoospermic. My boyfriend was diagnosed this year at 35 with cf, and that is how we were able to get the full cf panel done. An spermiogram would also rule out primery cillia dischinesia (I´m not sure if traslate this right to english), this illness could also mimic cf symptons.

 

[rvm1212]

HI nervous1

I don´t know if you are a man or a woman. If a man you could ask for an spermiogram. 99% of man with cf are azoospermic. My boyfriend was diagnosed this year at 35 with cf, and that is how we were able to get the full cf panel done. An spermiogram would also rule out primery cillia dischinesia (I´m not sure if traslate this right to english), this illness could also mimic cf symptons.

 

[rvm1212]

HI nervous1

I don´t know if you are a man or a woman. If a man you could ask for an spermiogram. 99% of man with cf are azoospermic. My boyfriend was diagnosed this year at 35 with cf, and that is how we were able to get the full cf panel done. An spermiogram would also rule out primery cillia dischinesia (I´m not sure if traslate this right to english), this illness could also mimic cf symptons.

 

[rvm1212]

HI nervous1

I don´t know if you are a man or a woman. If a man you could ask for an spermiogram. 99% of man with cf are azoospermic. My boyfriend was diagnosed this year at 35 with cf, and that is how we were able to get the full cf panel done. An spermiogram would also rule out primery cillia dischinesia (I´m not sure if traslate this right to english), this illness could also mimic cf symptons.

 

[beleache]

Hi Nervous, Welcome back.. We have someone else (Bree) on the site that doesn't have c/f but has many simptoms and is going to get a tx I hope i got this info right, if not someone please correct .. Anyway, you are part of this group now, you have many of the same problems .. BTW you have a great fev1 (do your best to keep it that way) I also didnt bring up anything when i did treatments (for years mind you) until i changed centers and was taught the correct way of doing them... I hope you get the answers you are searching for you deserve that ( it took 44 years for me to get my dx and 50 for my sister to get hers) Please keep us up-dated.. Take care <img src="i/expressions/face-icon-small-smile.gif" border="0"> joni P.S. any ?'s just PM me...

 

[beleache]

Hi Nervous, Welcome back.. We have someone else (Bree) on the site that doesn't have c/f but has many simptoms and is going to get a tx I hope i got this info right, if not someone please correct .. Anyway, you are part of this group now, you have many of the same problems .. BTW you have a great fev1 (do your best to keep it that way) I also didnt bring up anything when i did treatments (for years mind you) until i changed centers and was taught the correct way of doing them... I hope you get the answers you are searching for you deserve that ( it took 44 years for me to get my dx and 50 for my sister to get hers) Please keep us up-dated.. Take care <img src="i/expressions/face-icon-small-smile.gif" border="0"> joni P.S. any ?'s just PM me...

 

[beleache]

Hi Nervous, Welcome back.. We have someone else (Bree) on the site that doesn't have c/f but has many simptoms and is going to get a tx I hope i got this info right, if not someone please correct .. Anyway, you are part of this group now, you have many of the same problems .. BTW you have a great fev1 (do your best to keep it that way) I also didnt bring up anything when i did treatments (for years mind you) until i changed centers and was taught the correct way of doing them... I hope you get the answers you are searching for you deserve that ( it took 44 years for me to get my dx and 50 for my sister to get hers) Please keep us up-dated.. Take care <img src="i/expressions/face-icon-small-smile.gif" border="0"> joni P.S. any ?'s just PM me...

 

[beleache]

Hi Nervous, Welcome back.. We have someone else (Bree) on the site that doesn't have c/f but has many simptoms and is going to get a tx I hope i got this info right, if not someone please correct .. Anyway, you are part of this group now, you have many of the same problems .. BTW you have a great fev1 (do your best to keep it that way) I also didnt bring up anything when i did treatments (for years mind you) until i changed centers and was taught the correct way of doing them... I hope you get the answers you are searching for you deserve that ( it took 44 years for me to get my dx and 50 for my sister to get hers) Please keep us up-dated.. Take care <img src="i/expressions/face-icon-small-smile.gif" border="0"> joni P.S. any ?'s just PM me...

 

[beleache]

Hi Nervous, Welcome back.. We have someone else (Bree) on the site that doesn't have c/f but has many simptoms and is going to get a tx I hope i got this info right, if not someone please correct .. Anyway, you are part of this group now, you have many of the same problems .. BTW you have a great fev1 (do your best to keep it that way) I also didnt bring up anything when i did treatments (for years mind you) until i changed centers and was taught the correct way of doing them... I hope you get the answers you are searching for you deserve that ( it took 44 years for me to get my dx and 50 for my sister to get hers) Please keep us up-dated.. Take care <img src="i/expressions/face-icon-small-smile.gif" border="0"> joni P.S. any ?'s just PM me...

 

[paws]

Welcome Nervous,

CF diagnosis or not, you're dealing with many issues we're all dealing with. I definitely recommend getting a sputum culture and becoming very proactive with your health care. Are they treating your sinusitis agressively as well?

 

[paws]

Welcome Nervous,

CF diagnosis or not, you're dealing with many issues we're all dealing with. I definitely recommend getting a sputum culture and becoming very proactive with your health care. Are they treating your sinusitis agressively as well?

 

[paws]

Welcome Nervous,

CF diagnosis or not, you're dealing with many issues we're all dealing with. I definitely recommend getting a sputum culture and becoming very proactive with your health care. Are they treating your sinusitis agressively as well?

 

[paws]

Welcome Nervous,

CF diagnosis or not, you're dealing with many issues we're all dealing with. I definitely recommend getting a sputum culture and becoming very proactive with your health care. Are they treating your sinusitis agressively as well?

 

[paws]

Welcome Nervous,

CF diagnosis or not, you're dealing with many issues we're all dealing with. I definitely recommend getting a sputum culture and becoming very proactive with your health care. Are they treating your sinusitis agressively as well?