When To Research Medical Symptoms And Diagnoses

Almost everything I might say after this is arguable. It would be possible for an intelligent person to take a different view.
So, read with caution, taking it simply as one way of looking at things, as illustrative examples.

More later.

And hmmmmm - maybe someone else could chip in with a post or two? Even if only with anecdotal but instructive examples from where patient meets System, from where the proverbial rubber meets the road. Otherwise I feel like a Hyde Park homie droning on from atop his crate!

 

Anecdotal....
After being told for so long that the key to my LO's progress will be early intervention, her lab results are now pointing towards a diagnosis that has no cure and very little chance of independent living.
I had to start her on the same medication that I had the luxury of declining a few years ago for myself for a different condition.
At this point, I think journal keeping and keeping myself sane will have to take priority.
But wondering what I could have done differently when there were no outward manifestation of her condition until very recently. Could have maybe insisted that something else was medically wrong because I was in fact trying my best at building her skills with only marginal success?
But how was I to judge that my best was good enough? 'Know thyself' ha!

 

Am not totally opposed to the idea of patients checking out their condition and researching facts. (In fact I can never overcome the temptation to do so whenever I am told something by the doc). However, whenever I open Google, there is such an overwhelming amount of info that I am unable to decide what is really applicable to me and what isn't.

The fact is that docs are trained medically and that involves more than just a handful of symptoms. They study various aspects and are in a position to put together all relevant information, information which we would not even be aware existed to start researching it. It is not just information but years of experience that counts. So where does all that researching lead us? To a lot of doubts about what the doc says and more worries that we have the most dreaded disease in all of human history.

Researching info can be useful only to the extent that it gives us some doubts which need to be cleared by the doc.

As for docs giving advice about what they'd do or not do, I'd say they are obliged to answer if I were to ask "what would you do in my place"? And it is incumbent on the patient to understand that docs are human beings who might make a wrong judgment. At some point one needs to trust the doc one goes to. Going to too many docs will only end up confusing the patient.

So, read whatever you like, research all you like, but ultimately go to a doc you can trust.

 

I was looking into why doctors misdiagnose and found this article. Its slightly long: http://www.oprah.com/health/False-Medical-Test-Results-Medical-Tests-with-Wrong-Results .

A few highlights from this article:
- The Truth Behind America's Terrifying Epidemic of Medical Mistakes. The once simple fee-for-service doctor-patient relationship has been eroded by burdensome paperwork, managed-care hassles, advances in complicated technology, more handoffs of patients from one set of doctors to another, and the long-standing problem of fatigue among residents and interns. A large number of unnecessary deaths-more than 7,000-are due to medication errors, mostly from illegible handwritten notes and prescriptions, confusion over drugs with similar names, and doctors' lack of knowledge about the appropriate use of a drug.

- Beyond all the technical and logistical glitches, many believe that the most pernicious problem is lack of communication-between doctors, nurses, administrators, and patients

- In a few progressive hospitals, a true revolution is taking place as doctors are acknowledging their errors and saying they're sorry. By and large, however, most continue to adopt a defend-and-deny position, which inherently contains a sad irony

Another related article w.r.t autism misdiagnosis:
http://health.usnews.com/health-new.../autism-signs-may-be-missed-in-short-checkups

One more:
Woman misdiagnosed for 30 years gets relief from simple pill

Coming back to the OP:

Considering the fact that these days doctors are running around like robots in a complicated system, it is important to do own research. No, a doctor always doesn't know the best. A vast majority of the doctors may know common diseases. They learn through each and every case. Many diseases could be in the book, but they themselves have not seen it all. With experience a few may have seen a few unusual cases.

Just to escape being misdiagnosed and losing a limb or lung, a patient or the patient's family should research. Not just before, also during and after the checkup/diagnosis. During comes off as the most important stage for research. Not just to know the condition, but also one should understand the jargons, to know where the condition is present and what kind of treatment is offered.

Its best to say "appendicitis was taken out " and not give hints like "its probably not" or "could it happen again?". IMO, its like feeding one's self-diagnosis to a most-likely fatigued doctor who will probably hear the words and discard the possibility of it showing up again or just straight away perform another surgery for nothing . And that's probably going to lead to a series of wrong diagnoses.
Like in these cases:
Burton woman who had appendectomy twice wins $108,000 for botched laparoscopy surgery
http://www.xojane.com/it-happened-to-me/acute-appendicitis

Research, ask what is necessary, but do not pass on the self-diagnosis to the professional or insist that they are wrong - unless you keep feeling something is wrong even after multiple diagnoses and lab tests.

Depends on the case. A younger doctor may know about an upcoming development but a older doctor will have more clinical experience. A combined team of both could possibly be the best for rare conditions.

 

That 'probably not' was written in a humorous vein - flagged by the 'errrrmmmm'. Not a literal suggestion for the actual words to use.
As for the stories of recurrent appendicitis after surgery in the links, one was a medical error and the other a relatively rare event, not the sort of thing one can plan for.

 

You cannot. Rihana is exactly right. You cannot second guess yourself. There is no end to the torture you can inflict on yourself as a mother. Complex decisions under conditions of uncertainty, with partial information, are very, very difficult. You cannot do much more than choose a course of action as best as you can and hope that it all works out. 'Your best' is simply your best. Whether it is 'good enough' is an outcome that rests on many factors beyond your control - far too many.

I am very sorry to hear about your daughter. I can understand what you are going through. These are serious matters; my efforts to write thoughtfully in this thread is one modest acknowledgement of that.

 

Also relevant is the terminology. 'Birth control' triggers mental associations with sex and morality. However, viewed from a purely technical perspective it is an 'endocrine intervention'. The latter may be 'easier' to deal with than the former!