Doc telling not to look up cf sites

[irishdavid]

Shell,

Do you mind me asking what hospital you were told this?

I can understand doctors not wanting patients to get over worried about symtoms they may read or get over excited about wacky cures they find on the net but theres no excuses for telling people that they shouldn't keep themselves informed about their disease.

I find this forum excellent as there are so many people that you tend to get a balanced view of everything when a few people post on a topic and the more hysterical and less informed opinions tend to get weeded out.

 

[irishdavid]

Shell,

Do you mind me asking what hospital you were told this?

I can understand doctors not wanting patients to get over worried about symtoms they may read or get over excited about wacky cures they find on the net but theres no excuses for telling people that they shouldn't keep themselves informed about their disease.

I find this forum excellent as there are so many people that you tend to get a balanced view of everything when a few people post on a topic and the more hysterical and less informed opinions tend to get weeded out.

 

[anonymous]

The CF doctor we saw when my daughter was diagnosed (in 2004) told us not to get on the internet at all for CF information other than cff.org (obviously I listened to him, lol). We have since switched clinics and her current doctor says she thinks it is great to have contact with others who have CF or have a loved one with CF, etc.

It is interesting how doctors "treat/prescribe" very differently!

Kelli - mom of Sydney 2.5 wcf

 

[anonymous]

The CF doctor we saw when my daughter was diagnosed (in 2004) told us not to get on the internet at all for CF information other than cff.org (obviously I listened to him, lol). We have since switched clinics and her current doctor says she thinks it is great to have contact with others who have CF or have a loved one with CF, etc.

It is interesting how doctors "treat/prescribe" very differently!

Kelli - mom of Sydney 2.5 wcf

 

[anonymous]

hi its shell,
Can;t belive all the posts i only wanted to see what the general opinion of it was. firsity i wouldn't mind so much if they said it and like he was just born but he's 22 years of age and i think by know knows all about cf. it puzzles me why they said this, maybe they thought that thre the doc leave it to them but they where doing nothing thwy said it was with dtrawal systoms from not drink coke so to start drinking it again still got the headaches so as i said i just happen to come accros it and go ah thats interesting. So he showed it to the docs cos he to found it interesting to but they dismised it and told him not to be coming on here. lol he doesn't even come on here, him the cf and i do(not cf) kinda strange. but needless to say the headaches are still there!!!!!
Kiwilady-- thanks for the bit at the end it was sweet and to irish david i'd rather ask my friend first if i can say the hospital.
Shell.

 

[anonymous]

hi its shell,
Can;t belive all the posts i only wanted to see what the general opinion of it was. firsity i wouldn't mind so much if they said it and like he was just born but he's 22 years of age and i think by know knows all about cf. it puzzles me why they said this, maybe they thought that thre the doc leave it to them but they where doing nothing thwy said it was with dtrawal systoms from not drink coke so to start drinking it again still got the headaches so as i said i just happen to come accros it and go ah thats interesting. So he showed it to the docs cos he to found it interesting to but they dismised it and told him not to be coming on here. lol he doesn't even come on here, him the cf and i do(not cf) kinda strange. but needless to say the headaches are still there!!!!!
Kiwilady-- thanks for the bit at the end it was sweet and to irish david i'd rather ask my friend first if i can say the hospital.
Shell.

 

[anonymous]

Ok Its shell's friend here just to answer a few of ur questions.
1st of all yes i'm dam lucky to have a friend like shell that goes to the trouble to fnd out info about CF she's a star,
Irish David i attend beaumount hospital where do u go?
I agree with most of you that the internet is a great form of support for PWCF and yes there is great info for us to read on cf.
its not the 1st tme that when i presented information to my doc's that i've been shot down and told that doesnt work (regarding the vest for physio). yes there is misleadin information on sites too. but anything that i've shown to my docs that my mate has found on cf sites was relevent to my sympthoms but always shot down when shown to the docs. dont worry i dont listen to the docs much anyway, and will keep using the cf site for info and support

Sometimes the docs are wrong too who is to say they dont make mistakes,

 

[anonymous]

Ok Its shell's friend here just to answer a few of ur questions.
1st of all yes i'm dam lucky to have a friend like shell that goes to the trouble to fnd out info about CF she's a star,
Irish David i attend beaumount hospital where do u go?
I agree with most of you that the internet is a great form of support for PWCF and yes there is great info for us to read on cf.
its not the 1st tme that when i presented information to my doc's that i've been shot down and told that doesnt work (regarding the vest for physio). yes there is misleadin information on sites too. but anything that i've shown to my docs that my mate has found on cf sites was relevent to my sympthoms but always shot down when shown to the docs. dont worry i dont listen to the docs much anyway, and will keep using the cf site for info and support

Sometimes the docs are wrong too who is to say they dont make mistakes,

 

[anonymous]

<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>Ok Its shell's friend here just to answer a few of ur questions.

1st of all yes i'm dam lucky to have a friend like shell that goes to the trouble to fnd out info about CF she's a star, <blockquote>Quote<br><hr>


Ah bless
Shell

 

[anonymous]

<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>Ok Its shell's friend here just to answer a few of ur questions.

1st of all yes i'm dam lucky to have a friend like shell that goes to the trouble to fnd out info about CF she's a star, <blockquote>Quote<br><hr>


Ah bless
Shell

 

[irishdavid]

Sounds like you have a great friend there "shells friend". I'm sure we all wish we knew someone who went to so much effort to find out about cf.

I attend Castlebar. I've never been in the situation where I suggested something that I had read on the net to my doc but I think that he would be fairly open minded about that sort of thing. Even if it was a bad idea I don't think he would warn me off using the internet for cf related stuff.

David

 

[irishdavid]

Sounds like you have a great friend there "shells friend". I'm sure we all wish we knew someone who went to so much effort to find out about cf.

I attend Castlebar. I've never been in the situation where I suggested something that I had read on the net to my doc but I think that he would be fairly open minded about that sort of thing. Even if it was a bad idea I don't think he would warn me off using the internet for cf related stuff.

David

 

[Burn]

CF forums are a good way to talk to other people with CF. and the best thing about talking to someone else with CF is, they know exactly what it's like to have CF.

 

[Burn]

CF forums are a good way to talk to other people with CF. and the best thing about talking to someone else with CF is, they know exactly what it's like to have CF.