When To Research Medical Symptoms And Diagnoses

Yes, I understood that. Still wanted to point it out to the perspective user.

 

This is the case for most of us, isn't it? Until it happens, we remain unaware. Until there's a name attached to a condition, we don't even know where to look. There's a baffling period of uncertainty - am I imagining this? Is this real? Only in hindsight does it crystallize into a 'story', as a series of potentially meaningful events.

I am amazed that they even did that. Usually, liability concerns overshadow such admissions. It is possible that you were let down by a lack of vigilance on the part of the developmental pediatrics team.

If it is any consolation:
Autism is now thought to arise from impaired synapse (connections between neurons) formation. There are hundreds of genes important for this process. A defect in any of them (one or more) could lead to autism. It is a very complex illness, barely understood. New insights arise everyday. So, it is by no means clear what sort of intervention really helps and in whom such interventions are most effective.

 

One reason to get 'research savvy' is that you, as a 'patient', have the most at stake. So, at one level, it is simply a matter of taking responsibility for your own health. At a different level, for someone such as me, it can also serve as a coping mechanism. Just having a handle on what is going on helps deal with it, whatever the 'it' may be, for myself or with people close to me. For others, such research may amplify anxiety. You need to first figure out where you stand.

If you are to take responsibility as an active participant in your own care, the physician has an obligation to listen as well. This dialogue between patient and physician carries fair potential for misunderstanding. Training, expertise, deference to expertise, education level, culture, language, fear, attitude and many more factors come into play (One powerful example of a failure of this dialogue is this classic of medical anthropology, admittedly extreme for this audience, but nevertheless informative).

The trend toward 'evidence based medicine', desirable as it is, sometimes brings distortions of its own. There is often an excessive reliance on high technology (MRI, CAT scans and the like). Tests focused on ruling out rare conditions are partly driven by the nightmare of every hospital administrator - liability / malpractice lawsuits. There is also a modern "algorithmic approach" to differential diagnosis that overshadows the conversation between physician and patient. This is almost as if the physician were merely an 'expert system' a la IBM's Watson, navigating complex decision trees with multi-factorial nodes, in a push toward a so called 'Cognitive Health Care'.

This aspect has not been ignored by thoughtful physicians either. If you want to effectively manage a conversation with your physician, in a way that she actually listens, then one place to start may be here: "When Doctors Don't Listen". The book is somewhat irritating, written as it is in the simple, cheery, chatty, middle-school level favored by publishers (and includes a fair amount of fluff to pad it out to book length), but I sympathize. In the United States, it is mandated by law that medical information sheets, patient consent forms and the like be written at a sixth to eighth grade level. This of course is well near impossible to do for the high tech medicine of today, but brave attempts are made nevertheless!

 

Annoying as it may be to read, the book is mostly light reading (therefore not a time sink) and if you are used to studying for exams Indian ishtyle, then you can rifle through the pages quickly and extract what you need. It does have some useful nuggets like the bits about "chief complaint" and how it might distort the diagnosis path or that about formulating your complaint/symptoms along an axis of: onset, timing, pace, severity and changes over time.

 

Deleted. Some quoting hassle.

 

This is a slight digression from the main topic of interest, but before I forget, I thought that I should add a link here to this article. The first step in navigating the system is getting a high level view of it, disturbing though it is. Plus this is election year. The article is well written (see? I can say nice things too!) and a must-read. It has also been expanded to book length following an overwhelming response after the essay was first published in Time magazine.

See: Bitter Pill.

 

Continuing:
An unexplained medical problem in search of a diagnosis can be a very complicated situation. On the other hand, for the more common complex diseases (breast cancer, arthritis, diabetes and the like), there are many sources of information that provide a baseline from which to start your research for your specific needs. At least in the United States, you can find many good books and of course high quality websites (Mayo, Sloan-Kettering, CDC, NIH etc.) are accessible from almost anywhere.

Many people also turn to online discussion forums, say for example something like this one. These can be a useful source of information and support, if only to drive home the point that you are not alone. However, the crucial thing to remember when collecting information from such discussion boards is this:

Even though many members post technical information about their conditions, they are not comprehensive. For example they do not include risk factors or comorbidities i.e. medical conditions existing simultaneously with the disease in question. For example, someone who appears to be in exactly the same situation as you may be quite different from a medical standpoint. You won't know that they are overweight or have high blood pressure or have been taking other medications with accompanying risks or that they grew up in a colorful village near Chernobyl. We all know that smoking is a risk factor for lung cancer. It is relatively easy to imagine why it might be a factor in throat cancer. However, do you know that it is a proven risk factor for bladder cancer? Similarly, comorbidities play an important role in survival and response to treatment. Here is one discussion, just a teaser to convince you that I'm not making stuff up.

So, by all means seek out support and information from such forums, but keep unknown factors in mind and do not allow such partial information to be a decisive factor in medical decision-making.

 

Looks like most of the students have dropped this class in favor of “Keeping up with the Kardashians: A Window into Kontemporary Kulture” tsk, tsk. Why can’t you all be like that nice boy Sundar? He was always studying and now he is the general manager of Gaggle Company. You lot are going to end up in the fish market.

 

Continuing:
Most people do not know how to interpret the results of a diagnostic test. This includes physicians. When someone hears that a test for this or that dreaded disease is positive, people start to freak out immediately. No one has a clue about the “sensitivity” (i.e. ability of the test to identify “true-positives”) or specificity (i.e. the fraction of “false-positives” produced by the test), whereas these are the first questions you should be asking. Chances are that your physician won’t know. Some tests come with accompanying guidelines for interpretation, but these are often ignored.

Here, try this exercise, especially the puzzlers among you(!):

Excessive engagement with Facebook causes Brain-Rot Disease (BR), in which your brains slowly liquefy and pour out of your ears. But lo and behold, there’s a test for BR!!! You take the test and horror of horrors, you test positive. Now, since you have been assiduously following this thread and doing all your homework, you are super sharp. You ask your physician for the background dope, shown below:

About 1% of FB users suffer from BR.
Given that someone has BR, there is a 90% chance that the test will be positive.
Given that someone is unaffected the test will still be positive 5% of the time (false positive).
Your test is positive. So what is the probability that you have Brain-Rot Disease?

This is not difficult to figure out. Middle school math will do. However, studies have shown that about 80% of physicians get this wrong!

PS: Statistically savvy people are forbidden from responding. This means you @Laks09 and @Gauri03! You can of course post an answer (with explanation!) or hints later, after others have had their chance.