Doctors And The Internet

[Labrat]

How many of you have ever been told by a doctor that you should "stay off the internet" in terms of researching health matters? I am surprised to still be hearing this sentiment. I recognize that there are some people who look at two or three sites with basic information and freak out, assuming they have 15 different diseases. But many, many people have figured out their own medical mysteries when doctors were not able to do so.

 

I have a friend whose sister-in-law took her child to several doctors in an effort to diagnose an unusual constellation of symptoms. She was treated as if she was a hysterical mother and given several diagnoses, none of which seemed to truly fit.

 

She kept researching and finally discovered that there was a disease that explained all her daughter's symptoms, made an appointment with the correct specialist, and got a confirmation of diagnosis immediately. Her child has made great improvements now that the correct treatment is in place.

 

Doctors tell us we are partners in our own healthcare, but my experience has been that most are not interested in hearing what I have to say about my own body and the research I've done. I believe it should be fairly easy to differentiate between someone who saw something on WebMD and got scared and someone who obviously did some actual research. Is this just a throwback to when med schools were still teaching doctors they had to come off as infallible?

[Eclogite]

I noticed that no one had yet replied to your post. I wondered if it was because you made several statements that you presented as being quite likely, when each of them is - I think contestable. Specifically:

 

1. How many of you have ever been told by a doctor that you should "stay off the internet" in terms of researching health matters?

Well, I have never been told this and do not know anyone who has. I am sure that many people have been told this, but I just haven't met them, or yet been directed to a study that has examined this. I am prompted to ask the question, though, have you been directly told this? There seems an undertone of annoyance in your post that could be explained by that.

 

2. I am surprised to still be hearing this sentiment.

Although I have not heard of people being admonished to "stay of the internet" I am well aware of the tendency to hypochondria - at least in a colloquial sense - that exists in a substantial portion of the population, and to a small degree, probably, in most of us. So this is, to my mind, an imminently sensible piece of advice from a GP to her or his patient.

 

3.Doctors tell us we are partners in our own healthcare, but my experience has been that most are not interested in hearing what I have to say about my own body and the research I've done.

Either you need to get a new set of doctors, or change the way you present your data.  I scrupulously avoid doing any research on what ails me, but it is difficult to avoid pciking up information here and there, so that I have rarely gone to see my GP without two, or most three diagnoses in mind. I do not recall an instance when one of these was not correct. I have found doctors very open to phrases such as "I had wondered if it might be..........". This is acceptable, whereas statements such as "Since I have a, b and f, I think I may be suffering from X", are likely to generate low level animosity.

 

I am at a loss as to how your doctors can determine what is wrong with you without listening to what you have to say about your body. That is fundamental to carrying out a diagnosis. Again, I wonder if you are trying to set the agenda of what is discussed, while your doctor is patiently trying to follow a structured approach to the problem. I have, on a couple of occassions, produced tables and plots of how certain of my symptoms have varied over time. In both instances my GP has been keen to study these and then added them to my records.

 

4.I believe it should be fairly easy to differentiate between someone who saw something on WebMD and got scared and someone who obviously did some actual research.

Might we also want to distinguish between someone who has done some actual research and someone who has been trained in medical practice?

[Buffy]

Yah, I agree with Eclogite: I get my healthcare through the gigantic HMO Kaiser-Permanente, and boy if they can get you to avoid engaging with a human they sure do because it costs money. I get automated phone call reminders and get pushed to the web site for everything (scheduling, prescriptions, etc. and heck they don't want you to show up at the pharmacy at all if they can mail it to you), and they're slowly adding WebMD like features. If something's actually wrong though they want you in (even if it's going to the emergency room), and they're pretty good at listening, even if you need to go through the bureaucratic escalation through the gauntlet to specialists.

 

I have seen older doctors who keep a more priesthoodly attitude toward diagnosis, because yes, misdiagnosis is really easy, but younger doctors know they have to listen to get to the diagnosis quickly.

 

 

The art of medicine consists in amusing the patient while nature cures the disease, :phones:

Buffy

[labelwench]

My mother has a rare systemic disorder (CREST form of scleroderma) and it took the doctors a long time to diagnose her and most doctors will never encounter a patient with this disorder in their career. For that reason, she belongs to a national support group and has been doing her own research for almost two decades, most of it on-line since she got a computer a decade or so ago.

 

There presently is no cure and treatment consists of various drugs to alleviate the symptoms as the disorder progresses. My mother has managed, for the most part, with very few drugs but has reached a point where she has decided to try a couple of things. She is allergic to a great many medications and topical compounds so the doctors very much rely on her to come forward with the suggestions of what approach and/or medications she would like to try.

[Eclogite]

I am sure that there are a number of people in your mother's situation who have done what she has done and have greatly benefited from it. It sounds as if the doctor's involved in your mother's treatment fully appreciate her efforts and her information. This is a good thing to come out of an unfortunate illness.

 

However, the majority of doctor's visits are for much more mundane, or certainly much more common. I think in those circumstances the understandable wish of the patient to research their condition is more likely to be a hindrance than a help.

[labelwench]

Doctors are only people too, and sometimes they don't know what to do.

 

I know of two cases of blocked carotid artery where the physicians here could not find anything to go on based on the battery of tests done and it was only because both patients insisted that something was wrong, did they get sent out to Vancouver for further examination. One patient had to insist on getting another doctor as her own physician would not refer her to the Vancouver services.

 

When they examined her in Vancouver, they had her in the operating room the same day she flew down, quite amazed that she was still walking. When she was young, she trained to swim the English channel and she is one tough old girl. I'm glad that she is also as stubborn as a rock or she would have been pushing up posies.

 

Please don't get me wrong. I have great respect for our medical profession yet I subscribe to the notion that the patient is the best judge of their own health. Then again, I don't know any hypochondriacs because all of my friends are workaholics. I am probably a type B in comparison.

[Labrat]

Ecoglite, it seems your experience has differed significantly from mine. I know many, many people who have been marginalized by doctors, people who have been dismissed or told their symptoms are all in their heads. You have honestly never heard a single complaint?

 

Perhaps this is a gender issue, then. I work with pregnant women and have been astonished over and over, not just by the stories they tell, but by what I've witnessed in regard to how they are treated by medical professionals. If ever there was a time to listen to your patient, it is when a process is taking place inside her about which we know comparatively little and can monitor almost not at all, compared to the scope of the unseen process.

 

Yes, doctors have a good deal of education and training. However, it is utterly imperative they give credence to what the patient is telling them.

[Eclogite]

Ecoglite, it seems your experience has differed significantly from mine. I know many, many people who have been marginalized by doctors, people who have been dismissed or told their symptoms are all in their heads. You have honestly never heard a single complaint?

I do not doubt that this occurs: I have never run across it. Well, not strictly true. I have heard people complaining about such treatment when it seemed clear to me that the doctor's assessment was accurate. So, our experiences are different and that highlights the danger of forming conclusions from anecdotal evidence.

 

I do not understand your statement that pregnancy is "a process....about which we know comparatively little and can monitor almost not at all". That is counter intuitive. It is also counter to the facts: how many scientific and medical journals are there that deal specifically with pregnancy? How many doctors and scientists are engaged in research in this field? Your statement is simply wrong.

 

You urge doctors to give credence to what the patient is telling them. No. You want the doctor to believe what the patient is telling them. They  should listen to the patient, but if they decide the patient is mistaken then they need to go on the basis of their own training and experience. This may be the first or second pregnancy the patient has experienced the doctor has dealt with scores, hundreds, or thousands.