IM confused with diagnosis

[lizlas]

Jennifers Hope:
<P>I dont understand, your script at bottom,in 2001 you had 3 positive sweat tests,  in sept 2010 you had full screening by mayo clinic and they found 2 genes, but then you were undiagnosed in nov 2010 after a normal nasal potiental difference....so why were you undiagnosed?</P>
<P> you can still have a normal nasal potiental difference and have cf.</P>
<P>In 2003 my local cf clinic didnt find any genes and said my sweats were only 25 and said no cf. in 2005 major cf clinic said sweats 60 ish and i had df508 and d1152h...and nasal differential wasnt quite rite,  so I dont know which to believe or if i just have bronchiectasis..(bxis)</P>
<P>and you said you dont have a name for your illness, is it mainly bronchiectasis that you have.? theres also a immobile cilia disease and kartengers syndrome, have you been checked for that?</P>
<P>(I hope I have cf so new drugs will help with symptoms. new drugs cant reverse damage , but my dr. says evn people with bxis are getting help with symptoms)</P>
<P>Liz</P>

 

[lizlas]

Jennifers Hope:
<P>I dont understand, your script at bottom,in 2001 you had 3 positive sweat tests, in sept 2010 you had full screening by mayo clinic and they found 2 genes, but then you were undiagnosed in nov 2010 after a normalnasal potiental difference....so why were you undiagnosed?</P>
<P>you can still have a normal nasalpotiental differenceand have cf.</P>
<P>In 2003 my local cf clinic didnt find any genes and said my sweats were only 25and said no cf.in 2005 major cf clinic said sweats 60 ish and i had df508 and d1152h...and nasal differential wasnt quite rite, so I dont know which to believe or if i just have bronchiectasis..(bxis)</P>
<P>and you said you dont have a name for your illness, is it mainly bronchiectasis that you have.? theres also a immobile cilia disease and kartengers syndrome, have you been checked for that?</P>
<P>(I hope I have cf so new drugs will help with symptoms. new drugs cant reverse damage , but my dr. says evn people with bxis are getting help with symptoms)</P>
<P>Liz</P>

 

[lizlas]

<BR>Jennifers Hope:
<P>I dont understand, your script at bottom,in 2001 you had 3 positive sweat tests, in sept 2010 you had full screening by mayo clinic and they found 2 genes, but then you were undiagnosed in nov 2010 after a normalnasal potiental difference....so why were you undiagnosed?</P>
<P>you can still have a normal nasalpotiental differenceand have cf.</P>
<P>In 2003 my local cf clinic didnt find any genes and said my sweats were only 25and said no cf.in 2005 major cf clinic said sweats 60 ish and i had df508 and d1152h...and nasal differential wasnt quite rite, so I dont know which to believe or if i just have bronchiectasis..(bxis)</P>
<P>and you said you dont have a name for your illness, is it mainly bronchiectasis that you have.? theres also a immobile cilia disease and kartengers syndrome, have you been checked for that?</P>
<P>(I hope I have cf so new drugs will help with symptoms. new drugs cant reverse damage , but my dr. says evn people with bxis are getting help with symptoms)</P>
<P>Liz</P>

 

[caza]

hey i am doubly confused with this.   I have bxs and have been diagnosed since i about 35ish but never been tested for cf my consultant seems to think my x rays dont suggest it.  Anyway are you saying that if the nasal result is normal it doesnt necessarily mean you dont have cf.    Can the cf indicators go up and down i dont know about these things.   it is confusing though not to know exactly what disease you do have although cf and nxs are not really dissimilar you still get the excess mucus from the areas of damage where it just dosent clear away properly.  The main difference i guess from treatment point of view is that you have access to different drugs and this can be considerable i understand.  if anyone else has any other info please reply.

 

[caza]

hey i am doubly confused with this. I have bxs and have been diagnosed since i about 35ish but never been tested for cf my consultant seems to think my x rays dont suggest it. Anyway are you saying that if the nasal result is normal it doesnt necessarily mean you dont have cf. Can the cf indicators go up and down i dont know about these things. it is confusing though not to know exactly what disease you do have although cf and nxs are not really dissimilar you still get the excess mucus from the areas of damage where it just dosent clear away properly. The main difference i guess from treatment point of view is that you have access to different drugs and this can be considerable i understand. if anyone else has any other info please reply.

 

[caza]

hey i am doubly confused with this. I have bxs and have been diagnosed since i about 35ish but never been tested for cf my consultant seems to think my x rays dont suggest it. Anyway are you saying that if the nasal result is normal it doesnt necessarily mean you dont have cf. Can the cf indicators go up and down i dont know about these things. it is confusing though not to know exactly what disease you do have although cf and nxs are not really dissimilar you still get the excess mucus from the areas of damage where it just dosent clear away properly. The main difference i guess from treatment point of view is that you have access to different drugs and this can be considerable i understand. if anyone else has any other info please reply.

 

[JennifersHope]

Hey sorry I almost didn't see this... I have two genes one is Df508 and one gene has not been described yet, it is called Q1330E... there is not enough research done on that gene.

My doctor that I was seeing at the time felt like my symptoms didn't add up with CF, he strongly felt that working was making me sick. He firmly believes that a Nasal PD is a definitive test for CF and when mine came back normal, he undiagnosed me.

I recently have had another sweat test and I am still testing positive even though my Addison's disease is under control. I have been told by other CF doctors that they would not have undiagnosed me especially now that I am culturing MAC, another form of mycobacteria and PA.

I am scheduled to go to National Jewish where I have worked very closely with Dr Nick and now with the MAC clinic.

I have asked, begged and pleaded for help understanding a diagnose but it was to no avail. I am very hopeful that National Jewish will lead me down the road to a proper diagnoses. RIght now I am sicker then I have ever been in my life, on many IV antibiotics, oxygen and a mess.

I never really had a lot of bronchitesis before, now in the past year, I have an increased amount, The other CF center I was at had stopped my CF meds, it is just recently that I have started them back up for now.. until we work things out.

I am also doing the vest again since I have bugs in my lungs and that will help CF or not.

I am not sure what to make of anything anymore, I highly respect/respected the center I went to, both doctors there are very smart and very knowledgeable. When I switched to a local CF center/local pulmonologist they are the ones who did a sputum found the bacterias found out I was walking around with an oxygen saturation of 88 which explained a lot of my symptoms that I was complaining about for over a year.

It is just in recent months I am realizing that some things slipped through the cracks like no sputum culture in almost two years and a few other things....

The reason it is so frustrating is because without a diagnoses, it is hard to know what to expect and what exactly I should and should not be doing preventatively

 

[JennifersHope]

Hey sorry I almost didn't see this... I have two genes one is Df508 and one gene has not been described yet, it is called Q1330E... there is not enough research done on that gene.

My doctor that I was seeing at the time felt like my symptoms didn't add up with CF, he strongly felt that working was making me sick. He firmly believes that a Nasal PD is a definitive test for CF and when mine came back normal, he undiagnosed me.

I recently have had another sweat test and I am still testing positive even though my Addison's disease is under control. I have been told by other CF doctors that they would not have undiagnosed me especially now that I am culturing MAC, another form of mycobacteria and PA.

I am scheduled to go to National Jewish where I have worked very closely with Dr Nick and now with the MAC clinic.

I have asked, begged and pleaded for help understanding a diagnose but it was to no avail. I am very hopeful that National Jewish will lead me down the road to a proper diagnoses. RIght now I am sicker then I have ever been in my life, on many IV antibiotics, oxygen and a mess.

I never really had a lot of bronchitesis before, now in the past year, I have an increased amount, The other CF center I was at had stopped my CF meds, it is just recently that I have started them back up for now.. until we work things out.

I am also doing the vest again since I have bugs in my lungs and that will help CF or not.

I am not sure what to make of anything anymore, I highly respect/respected the center I went to, both doctors there are very smart and very knowledgeable. When I switched to a local CF center/local pulmonologist they are the ones who did a sputum found the bacterias found out I was walking around with an oxygen saturation of 88 which explained a lot of my symptoms that I was complaining about for over a year.

It is just in recent months I am realizing that some things slipped through the cracks like no sputum culture in almost two years and a few other things....

The reason it is so frustrating is because without a diagnoses, it is hard to know what to expect and what exactly I should and should not be doing preventatively

 

[JennifersHope]

Hey sorry I almost didn't see this... I have two genes one is Df508 and one gene has not been described yet, it is called Q1330E... there is not enough research done on that gene.
<br />
<br />My doctor that I was seeing at the time felt like my symptoms didn't add up with CF, he strongly felt that working was making me sick. He firmly believes that a Nasal PD is a definitive test for CF and when mine came back normal, he undiagnosed me.
<br />
<br />I recently have had another sweat test and I am still testing positive even though my Addison's disease is under control. I have been told by other CF doctors that they would not have undiagnosed me especially now that I am culturing MAC, another form of mycobacteria and PA.
<br />
<br />I am scheduled to go to National Jewish where I have worked very closely with Dr Nick and now with the MAC clinic.
<br />
<br />I have asked, begged and pleaded for help understanding a diagnose but it was to no avail. I am very hopeful that National Jewish will lead me down the road to a proper diagnoses. RIght now I am sicker then I have ever been in my life, on many IV antibiotics, oxygen and a mess.
<br />
<br />I never really had a lot of bronchitesis before, now in the past year, I have an increased amount, The other CF center I was at had stopped my CF meds, it is just recently that I have started them back up for now.. until we work things out.
<br />
<br />I am also doing the vest again since I have bugs in my lungs and that will help CF or not.
<br />
<br />I am not sure what to make of anything anymore, I highly respect/respected the center I went to, both doctors there are very smart and very knowledgeable. When I switched to a local CF center/local pulmonologist they are the ones who did a sputum found the bacterias found out I was walking around with an oxygen saturation of 88 which explained a lot of my symptoms that I was complaining about for over a year.
<br />
<br />It is just in recent months I am realizing that some things slipped through the cracks like no sputum culture in almost two years and a few other things....
<br />
<br />The reason it is so frustrating is because without a diagnoses, it is hard to know what to expect and what exactly I should and should not be doing preventatively
<br />
<br />

 

[JustDucky]

Ah Jenn....how terrible that so many things have fallen through the cracks with you! When I read that you were culturing MAC I thought to myself, "why are those docs undiagnosing you with so many problems that scream CF?" To be honest, you quack like a CF'er....at the very least, they should never have stopped any of your treatments.. I sure hope that Nat'l Jewish gets you healthy again, you must be absolutely frustrated. I too have read that NPD's can be indefinite, especially if they are borderline. My pulmo told me this as well.

Hang in there, keeping you in my thoughts and prayers

Jenn 39 w/CF

 

[JustDucky]

Ah Jenn....how terrible that so many things have fallen through the cracks with you! When I read that you were culturing MAC I thought to myself, "why are those docs undiagnosing you with so many problems that scream CF?" To be honest, you quack like a CF'er....at the very least, they should never have stopped any of your treatments.. I sure hope that Nat'l Jewish gets you healthy again, you must be absolutely frustrated. I too have read that NPD's can be indefinite, especially if they are borderline. My pulmo told me this as well.

Hang in there, keeping you in my thoughts and prayers

Jenn 39 w/CF

 

[JustDucky]

Ah Jenn....how terrible that so many things have fallen through the cracks with you! When I read that you were culturing MAC I thought to myself, "why are those docs undiagnosing you with so many problems that scream CF?" To be honest, you quack like a CF'er....at the very least, they should never have stopped any of your treatments.. I sure hope that Nat'l Jewish gets you healthy again, you must be absolutely frustrated. I too have read that NPD's can be indefinite, especially if they are borderline. My pulmo told me this as well.
<br />
<br />Hang in there, keeping you in my thoughts and prayers
<br />
<br />Jenn 39 w/CF

 

[Havoc]

I suppose it doesn't matter if it has a name or not as long as they are treating the symptoms appropriately.

 

[Havoc]

I suppose it doesn't matter if it has a name or not as long as they are treating the symptoms appropriately.

 

[Havoc]

I suppose it doesn't matter if it has a name or not as long as they are treating the symptoms appropriately.

 

[lizlas]

<P>Jennifers Hope</P>
<P>so is that at the mayo clinic that they undiagnosed you and didnt do a sputum culture for 2 yrs...!!</P>
<P>just the little i've read on internet i've found 2 articles that said you can have cf with a normal nasal potiential</P>
<P>("The results show that in adult cystic <SPAN class=goog_qs-tidbit-0>fibrosis patients a normal basal nasal potential difference is related to milder</SPAN> respiratory disease, irrespective of the severity of the genotype."....google normal nasal potential and cf)</P>
<P>National Jewish, will sort you out. and I think they will say CF...when are you going there for appointment?...,,important thing is you are fianlly getting the rite abx.</P>
<P>keep us posted...take care....good luck....oh what were yr 3 sweats in 2001 and the latest one?</P>
<P>Liz </P>
<P> </P>
<P>"Clinical features of the individual patient as well as sweat test and mutation analysis results must be taken into consideration when using the NPD to diagnose CF."</P>
<P>from a john hopkins article</P>

 

[lizlas]

<P>Jennifers Hope</P>
<P>so is that at the mayo clinic that they undiagnosed you and didnt do a sputum culture for 2 yrs...!!</P>
<P>just the little i've read on internet i've found 2 articles that said you can have cf with anormal nasal potiential</P>
<P>("The results show that in adult cystic <SPAN class=goog_qs-tidbit-0>fibrosis patients a normal basal nasal potential difference is related to milder</SPAN> respiratory disease, irrespective of the severity of the genotype."....google normal nasal potential and cf)</P>
<P>National Jewish, will sort you out. and I think they will say CF...when are you going there for appointment?...,,important thing is you are fianlly getting the rite abx.</P>
<P>keep us posted...take care....good luck....oh what were yr 3 sweats in 2001 and the latest one?</P>
<P>Liz</P>
<P></P>
<P>"Clinical features of the individual patient as well as sweat test and mutation analysis results must be taken into consideration when using the NPD to diagnose CF."</P>
<P>from a john hopkins article</P>

 

[lizlas]

<P><BR>Jennifers Hope</P>
<P>so is that at the mayo clinic that they undiagnosed you and didnt do a sputum culture for 2 yrs...!!</P>
<P>just the little i've read on internet i've found 2 articles that said you can have cf with anormal nasal potiential</P>
<P>("The results show that in adult cystic <SPAN class=goog_qs-tidbit-0>fibrosis patients a normal basal nasal potential difference is related to milder</SPAN> respiratory disease, irrespective of the severity of the genotype."....google normal nasal potential and cf)</P>
<P>National Jewish, will sort you out. and I think they will say CF...when are you going there for appointment?...,,important thing is you are fianlly getting the rite abx.</P>
<P>keep us posted...take care....good luck....oh what were yr 3 sweats in 2001 and the latest one?</P>
<P>Liz</P>
<P></P>
<P>"Clinical features of the individual patient as well as sweat test and mutation analysis results must be taken into consideration when using the NPD to diagnose CF."</P>
<P>from a john hopkins article<BR><BR></P>

 

[Mommafirst]

Hey Jennifer -- at the conference this weekend Johns Hopkins announced a new website that they are working on to fully describe all the known mutations. I'm sure they won't have information on your Q one for some time, but they may be able to get you further in understanding what it does and means.

I know how frustrated you've been and I regularly pray you get the answers and help you need.

 

[Mommafirst]

Hey Jennifer -- at the conference this weekend Johns Hopkins announced a new website that they are working on to fully describe all the known mutations. I'm sure they won't have information on your Q one for some time, but they may be able to get you further in understanding what it does and means.

I know how frustrated you've been and I regularly pray you get the answers and help you need.