Doctor D Strikes Back!

It's time we make something very, very clear:

This is not a personal medical advice blog!

A lot of people just stumble across the "Ask An MD" name and start firing off questions before they read another word. I realize you regular D Readers are not the offenders but I have to rant at somebody, so Dr. D is going to nip this in the bud right now:

I will NEVER answer diagnosis or treatment questions online!

"Luke, I am NOT your doctor!"

This isn't that I don't love you guys. It just can't happen. I challenge you to find any MD giving personal medical advice to strangers online. Nope it isn't there!

Doctor D put this info on the "Email Dr. D" page but still a majority the letters to Doctor D basically ask: "Here are my symptoms. What should I do?"

Doctor D used to write polite replies explaining that the blog is here to answer general questions about doctors and the medical system, but I really cannot diagnose you... etc.

..but as the popularity and google rank of this blog has grown Doctor D's inbox has become congested with please-treat-me-over-the-Internet emails. Abandoning all bedside manners, Dr D has begun sending snarky rebukes to the worst offenders: "Did you read the f*cking disclaimer!?!"

But that pesky medical compassion keeps D feeling sorry for all these people sending hopeless requests for help to some random medical blog!

Could These Emails Be The Symptom Of A Real Problem?

This deluge of unanswerable questions got Doctor D thinking. These people begging for answers reveal some real issues with the medical system:

1. Sick people are desperate for answers.
2. It is way too hard to get a doctor to talk to you. It costs too much money to get in, and even then the doc is in and out in like 5 minutes!
3. Doctors are terrible at addressing what is really bothering patients.

"Houston, we have a problem."

Unfortunately, turning to some anonymous doc on a blog is not the solution to these problems.

Do you really want to risk getting an answer from an anonymous doc who can't examine you—some dude who may sleep under a bridge and just plays doctor online to meet chicks? Trust me: you don't want to do that!

And Doctor D won't risk his medical license making random guesses over email for people he's never laid eyes on. Giving you a harmful misdiagnosis over the internet would make Dr. D feel terrible, and it could be the blood in the water that sparks a feeding frenzy of lawyers and disciplinary boards.

Perhaps someday doctors will be more accessible, better communicators, and be able to treat you over the Internet, but this just isn't a reality right now.

Now you have to deal with regular screwed-up doctors working in a bizarre healthcare system. Yes, it sucks, but you really don't have many other options.

This is why Doctor D runs this blog: To help you navigate the tricky world of real doctors.

If He Can't Be My Doctor, What Use Is Doctor D?

Well, if you would even consider writing some anonymous blog for help then your doctor-patient relationship is probably on life support.

It may not be your fault (doctors suck at relationships—just ask Lady D), but you will be the one who gets hurt.

Instead of desperately emailing random bloggers on the internet for answers which will likely be wrong, why don't you learn to work on with the doctors you have in your life?

Doctor D volunteers his time as a relationship counselor for your doctor-patient relationships. D isn't going be your doctor (although, he blogs anonymously so, who knows, he might actually be your doctor?), but he just might teach you how to make your own doctor useful!

So respect D's boundaries! ...And send me some questions I can work with!

What do you think?

Currently there is no way to get answers direct from a doctor online. Getting diagnosed by a doctor miles away who can't examine you is a recipe for mistakes, BUT it would be convenient.

Would you be willing to take a risk with an online doctor? Would you forgo the ability to sue if the advice harmed you? Should the standards of doctor-patient relationships change to adopt to the wired world?

By the way, if you ever sent Dr. D a forbidden e-mail now is your chance to grovel and beg for his forgiveness!

What Is A Proper Work Up?

Doctor D's post on Mystery Illnesses last week was pretty controversial. Some readers were concerned that D suggested we should sometimes give up looking for answers after a thorough work-up is negative. An intelligent reader remarked that Doctor D over-simplified because he didn't define what a thorough work up is. Excellent point:

What is a proper work-up?

Of course it's tricky to define because a good work-up varies significantly depending on the patient, the symptoms, and the situation. It would be tedious to go into the details of any specific work-up. Instead D will give you a simple answer:

The correct work-up is an investigation of your symptoms that is more likely to benefit you than harm you.

Work-Ups Are Dangerous

Okay, let's take a moment to consider a well-known but poorly-understood fact: doctors hurt people. I'm not talking about just bad doctors here, I'm talking about good responsible doctors. Yes, I know the whole motto of our profession is "First, do no harm" but doctors have to be reminded of that because the tools of our trade are inherently dangerous.

Running tests on a person is not harmless. We stick you with needles. We zap you with radiation. We inject stuff into you. Then we find abnormalities that require more tests. Don't get me wrong, this type of thing is often helpful and even life-saving, but every time we start down this path we risk hurting you. Even perfectly correct work-ups carry real risks and harm real people.

We have worked very hard to decrease these risks. In some ways the medical work-up is a victim of its own success: we have decreased the risk so much that we begin to assume it's harmless. Health care does a lot more good than harm, so we forget about the harm all together.

You can safely carry a weapon if you respect the danger it presents, but you'll end up shooting yourself in the foot if we forget it's a weapon at all.

Doctor D has seen enough people hurt by medical care that he has a healthy respect for the danger he puts you in every time he orders a test or a medicine. Unfortunately, most patients have little or no concept of the dangers posed by health care. Even patients who distrust doctors trust our machines and laboratories.

Work-up First—Ask Questions Later

When faced with illness there is a natural urge to do something! You feel rotten and you go to a doctor for a solution. You expect the doctor will do something, and if that doesn't work the doctor will do even more.

There is a very old medical term called, Benign Neglect. It means that if the symptoms are not likely dangerous and the best course of action is just to watch patiently without doing anything. Doctor D has never heard a physician younger than 70 use this term.

Today's doctors are men (and women) of action. We have the tenancy to work up everything just because we can—because we are scientists and want to get to the bottom of things. Then the legal system reinforces this behavior. Doctors are frequently sued for not doing enough, but almost never sued for over-testing or over-treating although these things are also dangerous. We protect ourselves legally and keep our patients happy by ordering big work-ups for every symptom. More is always better!

Consequently US healthcare is the most expensive in the world, and Americans get more tests and scans than anyone else, but we aren't any healthier or live any longer. In fact, the opposite is true. We forget that healthcare should be used with caution.

The Proper Work-Up

Diagnosis is the heart of medicine. You come to Doctor D sick and he will do his best to give you a good answer. Keeping you safe, however, is more important than giving you answers, and no doctor should forget that our first duty is to "do no harm."

Seeing a doctor about your symptoms is like hiring a trigger-happy bodyguard. It might be worth it if you're life is threatened, but if you life in a safe neighborhood the jumpy security might be more likely to accidentally shoot you than save you.

Before your doctor goes nuts with a big work up you may want to ask, "Do you think these symptoms represent a dangerous disease or is it safer to ignore them?" Some symptoms need the big work-up and some need nothing at all.

If you come to me with an uncomfortable runny nose and low grade fever for a couple days you probably won't get any more work-up than a careful physical exam. If I don't find a problem I'll say "It's probably a virus" and advise you to ignore it. I could order a CT scan of your head, but that radiation that is more likely to harm you than provide any useful answers.

If you come to Doctor D with "red flag" symptoms like significant unexplained weight loss he'll probably keep testing until he finds an answer—but not every situation:

Doctor D once had a 97 year old that came to him with unexplained weight loss and weakness. Doctor D said, "This could be a lot of things, many of which are serious, but at your age aggressively finding and treating the serious ones are more likely to cause you pain than prolong your life. My advice is a few basic blood tests to rule out things that would be easy to treat. If that doesn't show anything then let's just treat the symptom with high-calorie shakes." The patient agreed and we did a tiny work-up that gave no answers. We treated the symptoms and he lived comfortably for several more years before dying in his sleep. I have no idea what finally killed him, and I really don't mind not knowing.

You Are The Boss

The harms or benefits of a work-up can extend beyond just the physical effects. Many comments on the last post mentioned the amount of personal reassurance people felt upon finding out the name of an illness. Personal values and perspectives on disease, diagnosis, and medical care vary drastically between people. Some hate the anxiety and discomfort of a work-up far more than their illness alone. Some hate the uncertainty of not knowing their disease and will undergo any painful or risk test just to find an answer.

Your work-up is a personal thing being done to your body and it should reflect your values.

Your body is yours and your doctor works on it for you. You are supposedly directing the care. Unfortunately, you don't always get to exercise your authority in the situation because your doctor is usually responding to what he or she guesses you want. First your doctor comes up with a large work-up because they assume you want it. Who wouldn't want lots of tests, right? If by chance the work up is inconclusive your doctor (or doctors) decide you must want it stopped, because further testing is risky without offering a lot of expected benefit (since most scary diagnoses have already been ruled out). Then if you say you want to keep going with the work-up the doctor suspects you are neurotic since you are acting against your own best interest.

A thorough work-up is complex, but your busy doctor may not take the time to discuss it. But the good news is you are in charge and don't even know it.

It is important for you to take charge of your work-up. Tell your doctor your values. Say what you want from your work-up. Ask about the risks and the benefits of tests. Remember the doctor is a dangerous ally, and communication is the safest way to take control of your healthcare.

In next week's post Dr. D will give practical tips for working with a doctor to manage your work-up.

What do you think? Do you think much about the risk of medical testing? Does your physician ever discuss risks of work-up? How would do you think your personal values would affect your approach to a work-up? Doctor D loves hearing your stories and thoughts in the comments.

Mystery Diseases (Diagnosing the Undiagnosable)

Lots of emails to Doctor D ask:

Why hasn't anyone figured out what's wrong with me?

This a common sentiment of patients whose doctors have yet to find a reason why they feel miserable. Patients with mystery symptoms tend to get lots of tests and shuffled to lots of specialists. More people than you might think are in this limbo of an illness without a diagnosis.

This is frustrating for everyone. Patients get irritated with their doctors: "If I just had a smart doctor like the ones on TV I would have been diagnosed by now." Doctors, who like having answers and hate looking foolish, get frustrated with patients and wonder if the weird symptoms are all in your head. We need to all take a collective deep breath.

We all want uncover the mystery diagnosis, but we have to acknowledge an unfortunate possibility:

We sometimes won't find a diagnosis.

There are diseases that are very common and ones that are very uncommon. It also stands to reason that there are diseases that may be so uncommon as to not yet be discovered. Some diseases may be so uncommon as to affect only one human being, which could be you. If this is the case you could never find a “diagnosis” per say, because a diagnosis groups you with other people with the same disease.

There is a point at which we say, "We've done a thorough work-up and found nothing. You may have to live with this." Doctor D hates saying this as much as any doctor, but at sometimes it needs to be said.

What is a disease?

Literally disease means dis-(without) ease. If you are visiting doctors because you have miserable symptoms you already know your body is without ease. You don’t need a multi-sylable medical term attached to your suffering to know that you suffer.

When doctors diagnose diseases, we look for particular patterns of symptoms and physical findings that are specific to known illnesses. It feels great for everyone when Doctor D can say with confidence, "You have _____."

But naming your disease doesn't cure anything. Having a diagnosis is useful because we can look at research from others who have had the same disease to know what treatments work and how we can expect the illness to progress. The rarer the disease the less other patients we have to get useful info from. We can just name your disease symptoms after you (John Doe Syndrome). It might feel satisfying to give it a name but it really doesn't help us make you feel better.

The Good News About Mystery Illnesses

People with mysterious symptoms get a lot of tests. A competent work-up has likely proven you don't have certain dangerous diseases. Doctor D has yet to see a patient with a mystery illness after a good work-up die. (I'm not saying it never happens, but it is exceedingly rare.)

Why? Even though the number of conditions that can cause discomfort are limitless, the mechanisms that can cause your heart to stop are fewer and generally well-known. Your large work-up has probably excluded most of the mechanisms that lead to premature death. A negative work-up can be a good thing.

Doctor D has often reassured frustrated patients about negative studies, "Trust me, you don't want the disease I was looking for."

The other good news: We don't always need a diagnosis to treat your symptoms.

Treatments do two things: postpone death and/or decrease suffering. A thorough work-up makes impending death unlikely, so we are left with easing the suffering. Doctors often treat symptoms even without knowing the underlying disease process. Whatever helps your symptoms and isn’t dangerous is a good treatment—whether it be Tylenol, or nice sunset, or an off-label use of a medicine.

Shifting Perspective

It can be liberating to realize that finding a diagnosis is not the be all end all. Lots of patients with mysterious symptoms get run through a gauntlet of tests and doctors and often feel pressure to advance to more uncomfortable and even dangerous testing to find an answer. Doctor D has actually found that patients often find it comforting to not to "have to find an answer."

Sifting the aim of care from finding a diagnosis to learning how to treat and live with your symptoms doesn't mean that we've given up. It just acknowledges that the ultimate goal is not diagnosing diseases, but helping you find ease and comfort.

What do you think? Do you have a mystery illness? Are you a doctor who works up patients with mystery illnesses? What do you think about acknowledging not all diseases will be diagnosed? As always Doctor D loves to hear your stories and perspectives.

Click here to read follow up post: What Is A Proper Work-up?

Is The Patient Crazy—Or The Doctor? (Friday Links)

Doctor D found a great blog by a patient with lots of physical maladies who used to be reporter for the Associated Press. Now she is "Sick Momma" and blogs on her life as a chronically ill mother and wife. As D was enjoying her blog and came across this post about some conditions he'd never heard of.

Apparently Sick Momma believes that many doctors suffer from a mental disorder which causes us to attribute symptoms we don't understand to a patient's mental state. Whatever!

Patients expressing unfamiliar complaints to their physicians often induce the "It's All In Your Head" (AIYH) or the "That's Impossible" response in doctors suffering from these behavioral problems and personality disorders.

Physicians fixated upon the metaphysical belief system of "If we don't know about it, then it doesn't exist" are suffering from a mental defect or psychological condition known as "Doctors with Unexplained Medical Beliefs": D.U.M.B.

Excuse me? I'm the doctor, so I'll decide what is a disorder and what isn't!

And I've never heard of these "behavioral disorders," which leads me to suspect they don't exist! Since I have no idea what put these crazy ideas in Sick Momma's mind, I shall diagnose her as depressed and put her on Prozac. I shall continue to add psychoactive medications until she learns not to challenge my god-complex!

***

Actually this is an interesting problem: What should be done about symptoms that make no sense? Lots of patients and doctors end up these situations.

The doc is thinking, "This doesn't sound like any disease I know about. All these symptoms are subjective sensations. Maybe it all is in this patient's head?"

The patient is thinking, "This doctor doesn't know what is causing my symptoms! What an ignorant doctor! If my doctor has never heard about this it must be something rare and horrible!"

It is a tricky impasse. Each can't help but have these impressions sometimes. We all want to prove we aren't ignorant or crazy, but then again we all want to be agreeable. Often these situations end up with either unnecessary antidepressants, unnecessary testing, or both.

We need better ways of discussing strange symptoms. Hence, in next week's reader question Doctor D shall provide some answers! (or perhaps some humble suggestions)

Until then, what do you think? Has a doctor ever told you your symptoms were all in your head? Have any of you healthcare providers ever had a patient who had nutty symptoms? Doctor D would love to hear your stories!