Emily65Roses
New member
Well certaily don't come in here expecting us to diagnose you and tell you exactly what's wrong with you when. But telling you not to come here altogether really is stupid.
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
Doc telling not to look up cf sites
- Thread starter anonymous
- Start date
Emily65Roses
New member
Well certaily don't come in here expecting us to diagnose you and tell you exactly what's wrong with you when. But telling you not to come here altogether really is stupid.
What misleading information? It's not like we tell people CF is a communicable disease, brought down from rats and poor sanitation. Seriously, what was so misleading that it merited not checking ANYTHING? COnsider the source, of course, but there's plenty of good information out there.
What misleading information? It's not like we tell people CF is a communicable disease, brought down from rats and poor sanitation. Seriously, what was so misleading that it merited not checking ANYTHING? COnsider the source, of course, but there's plenty of good information out there.
Bengalsfan
New member
Oh boy!! What they SHOULD have said is that not EVERYTHING on these sites is correct....however if something sounds similar to what you have going on to call and ask them about it. They should not tell you to NOT be in contact with other CF patients/friends/family!! That's a part of a support group...and what's more, the doctor's CANNOT offer the support you get from these sites. It sure sounded like a CF center a couple hours from where we live........sometimes it's like being under Hitler!! ;-)
LeAndra
wife to Jeremy 30 w/cf
LeAndra
wife to Jeremy 30 w/cf
Bengalsfan
New member
Oh boy!! What they SHOULD have said is that not EVERYTHING on these sites is correct....however if something sounds similar to what you have going on to call and ask them about it. They should not tell you to NOT be in contact with other CF patients/friends/family!! That's a part of a support group...and what's more, the doctor's CANNOT offer the support you get from these sites. It sure sounded like a CF center a couple hours from where we live........sometimes it's like being under Hitler!! ;-)
LeAndra
wife to Jeremy 30 w/cf
LeAndra
wife to Jeremy 30 w/cf
Emily65Roses
New member
Oh no no. I wasn't thinking you were looking for any kind of diagnosis. Just making a point. That yeah your doctor is right about there being a possibility for "misleading" information as far as "oh I'm coughing up blood, what does that mean?" or "I have chest pain... why?" But like I said, to tell you not to come to places like this altogether is really really dumb. I think it's a good idea you come here! <img src="i/expressions/face-icon-small-smile.gif" border="0">
Emily65Roses
New member
Oh no no. I wasn't thinking you were looking for any kind of diagnosis. Just making a point. That yeah your doctor is right about there being a possibility for "misleading" information as far as "oh I'm coughing up blood, what does that mean?" or "I have chest pain... why?" But like I said, to tell you not to come to places like this altogether is really really dumb. I think it's a good idea you come here! <img src="i/expressions/face-icon-small-smile.gif" border="0">
I can understand why the doctor thinks it makes his job harder. When I worked at a CPA firm we used to have clients calling all the time saying they read something on the internet that they could do such and such and they wanted to know why we didn't do this for them. It is a giant pain in the rump trying to convince these people that what they read was either semi-true and didn't apply to them or just not true at all. For whatever reason alot of people think everything on the internet is true. Having said that, I'd tell your doctor that you aren't self diagnosing or anything, but using this site as a guide for things you may not be familar with and would like to discuss with him. I think he is naive to think that you can't find anything usefull by reading this or other CF sites. I've learned a lot from this site about a lot of things I had no idea about or would even think to ask about.
I can understand why the doctor thinks it makes his job harder. When I worked at a CPA firm we used to have clients calling all the time saying they read something on the internet that they could do such and such and they wanted to know why we didn't do this for them. It is a giant pain in the rump trying to convince these people that what they read was either semi-true and didn't apply to them or just not true at all. For whatever reason alot of people think everything on the internet is true. Having said that, I'd tell your doctor that you aren't self diagnosing or anything, but using this site as a guide for things you may not be familar with and would like to discuss with him. I think he is naive to think that you can't find anything usefull by reading this or other CF sites. I've learned a lot from this site about a lot of things I had no idea about or would even think to ask about.
I have learned that if nothing else from this site you might get some new ideas or different insights on problems. Since the medical society around the world (remember www=world wide web) differs so much & what doctors have been doing for a patient ihasnt been working then why not bring up something that someone else has tried. All doctors dont know all....not even the best CF doctors. CF is complicated & varies so much which is one reason why what you do learn here needs to be addressed with a doctor, but to just disregard it because it came from a support group instead of someone in the medical field is just wrong! My doctor is very supportive of learning on my own & having CFers to relate to. She is great & understands a lot, but she doesnt live with it so she can only understand to a point. I am sure she wouldnt want me running out & trying everything under the sun just because I heard it on a CF website instead of a porno site, but she would always being willing to listen & discuss it! I am hoping that this doctor just misspoke & meant not to believe EVERYTHING you see on the sites or the internet instead of how it sounds!
I have learned that if nothing else from this site you might get some new ideas or different insights on problems. Since the medical society around the world (remember www=world wide web) differs so much & what doctors have been doing for a patient ihasnt been working then why not bring up something that someone else has tried. All doctors dont know all....not even the best CF doctors. CF is complicated & varies so much which is one reason why what you do learn here needs to be addressed with a doctor, but to just disregard it because it came from a support group instead of someone in the medical field is just wrong! My doctor is very supportive of learning on my own & having CFers to relate to. She is great & understands a lot, but she doesnt live with it so she can only understand to a point. I am sure she wouldnt want me running out & trying everything under the sun just because I heard it on a CF website instead of a porno site, but she would always being willing to listen & discuss it! I am hoping that this doctor just misspoke & meant not to believe EVERYTHING you see on the sites or the internet instead of how it sounds!
thelizardqueen
New member
When I informed my CF nurse that I was on this site, she thought it was a great idea. She did inform me though, that any questions I may have about what I read on here about treatments, etc - I should talk to her about. There's nothing wrong with a little information. So long as you're not self-diagnosing - which I don't think anyone on here is doing.
thelizardqueen
New member
When I informed my CF nurse that I was on this site, she thought it was a great idea. She did inform me though, that any questions I may have about what I read on here about treatments, etc - I should talk to her about. There's nothing wrong with a little information. So long as you're not self-diagnosing - which I don't think anyone on here is doing.