Mysterious Illness: When Medical Doctors Fail To Diagnosis A Disease Based On Patient’s Symptoms
What am I supposed to do when doctors can't find what’s wrong with me?
This question originally appeared on Quora. Answer by Dr. Ben Howell, Primary Care Physician.
This question is genius. Others have suggested doing the same thing over and over and expecting a different result, was Einstein’s definition of insanity. You’ve correctly asked what you can do differently.
Unfortunately, if multiple investigations and specialists haven’t given you a diagnosis then a random stranger on the internet won’t be able to either.
The details of your particular case are irrelevant. Let’s instead focus on the important question “What am I supposed to do when doctors can't find what’s wrong with me?”
The answer lies to this question lies in understanding that you are asking a very different question than the one your doctors are trying to answer.
You want to know what is wrong with you. You want a diagnosis to explain your pain. You want a label you can research on the internet. You want a cure. This is perfectly understandable. It is not a criticism.
However, you need to understand that doctors are not trying to answer the same question. They are searching for something they can fix . Whilst diagnosis is an important part of medicine, it’s not what we’re really about. Ultimately, we don’t care what label explains your pain - we just want to know how to treat it. The real reason we need a diagnosis is because it dictates treatment.
You are asking what is causing your abdominal pains. Your doctors are trying to find something they can fix.
Now, I admit that this difference is subtle. I know it will spark outrage in the comments. Things like “Of course doctors are focused on diagnosis. How can you stop the pain unless you know what is causing it?”. These people are correct, but, there is nevertheless an important difference that answers your question. I’ll try to explain …
When you go to your gastroenterologist you think you’re asking them “What is causing my pain?” But, you’re not. You’re really asking them “Is there a problem with my gastrointestinal tract that is causing my pain?”
You're asking a Yes or No question. When the answer is Yes, then their job begins. It’s the gastroenterologist’s, or GI Surgeon’s, job to fix pain that is being caused by the gastrointestinal system. Unfortunately, when the answer is No, their job is complete. There’s nothing in your gastrointestinal tract they can fix to cure your pain. If you then try to ask them, “Well, what IS causing my pain?” their answer will be “Not your gastrointestinal tract.”
Before exploding in anger over this ineptitude, please first consider all of the questions that Specialists have already answered for you. Let’s focus on the amazing results of your investigations. Your X-rays, CTs, and scopes have not found anything to explain your symptoms. This is fantastic news and I trust you’re overjoyed.
You have: No bowel cancer, no diverticulitis, no colitis or inflammatory bowel disease, no ischaemic bowel, no ovarian cancer, torsion or ruptured cysts, no uterine cancer or fibroids, no testicular torsion, no incarcerated hernias, no leukemia or lymphoma, no kidney stones or cancer, no ectopic pregnancies, no abscesses, no hemorrhages or hematomas, and no aneurysms or dissections.
Congratulations - you are now in a far better situation than a lot of people who saw those same specialists with left, lower abdominal pain.
Your specialists have put in a lot of work, and answered a lot of questions. In fact, the only question they haven’t answered is “What is causing my pain?” And, as stated above, that’s not their job.
Now the fact that gastroenterologists and urologists haven’t found the cause of your pain leaves us with multiple possibilities:
- It is possible that your specialists are hacks and they’ve missed something. You should not blindly trust a doctor - they are human and humans make mistakes. It is possible there is a problem with your gastrointestinal tract that has been missed and it is entirely reasonable to get a second opinion. However, if that second gastroenterologist agrees with the first, then now is the time to let go of the belief that all of those scans, scopes and specialists have missed something. It’s more likely that the problem is not your gastrointestinal tract.
- It is possible that your symptoms are a manifestation of early disease that is not detectable in its current state. This happens all the time. If you present with a scratchy throat, and there is nothing to see on examination (or an MRI), then it may be impossible to provide a definitive diagnosis at that point in time. No amount of specialists or tests will help.
However, when you return in a few days with a sore throat, runny nose and cough we can now confidently announce that your itchy throat was the beginning of an infection. In these situations it is your change over time that secures the diagnosis. For this reason, you should not assume that because doctors couldn’t find a physical cause previously that they won’t in the future. Instead, watch for new symptoms. They could be the clue to your diagnosis. Write them down including dates, times and what’s going on at the time. Discuss them with your doctor.
- You may be suffering from a disease that we simply do not know about yet. We’re learning more all the time. For example, stomach ulcers were long thought to relate to stress, until a madman by the name of Barry Marshall won a Nobel prize by giving himself stomach ulcers. The same doctors who confidently told people that they needed to reduce stress are now telling people they need treatment for helicobacter pylori. Maybe someone will win a Nobel Prize for discovering the cause of your abdominal pain.
- It is possible that you’re in the wrong office. A gastroenterologist looked at your gastrointestinal tract. Your urologist looked at your urinary tract. It is possible that your diagnosis lies in a neurologist’s office because it’s being caused by nerve impingement. You may find a diagnosis in another specialist’s office. However, you should not begin a tour of specialists asking each one in turn whether your pain could be explained by their area of the body. This is a very costly, and inefficient, way of obtaining a diagnosis.
Instead, focus on finding a good generalist who will begin to work through possibilities in a sensible order - from the most likely to least. They can refer you to a Specialist if your story, or investigations, warrant it. They can also save you a lot of time, and money. The most obvious choice would be a good family or general practitioner.
- When you approach this generalist you should not hijack the appointment. Do not simply ask to be tested for Thyrosaki’s disease because you read about it on the internet and think that’s what you have. This happens all the time, and, the end result is that the doctor will only be able to tell you that you don't have Thyrosaki's disease.
Just tell the doctor your story and begin a long journey of ticking off sensible possibilities one at a time. Provided that you have found a good generalist, stick with them and give them the opportunity to work through their list until it’s complete. Don't switch doctors hoping that the next one will guess your rare diagnosis at your first visit. Every time you switch doctors they will start again at the beginning. It’s what good doctors do. They check their colleague's work.
- Just as you don't blindly trust a doctor, you certainly do not trust the internet. The internet is awash with tales of people who suffered for years, and saw multiple specialists, before stumbling onto a magical healer who diagnosed their problem and, of course, can sell you the cure. You’ll find people claiming that modern medicine’s failure to know everything somehow proves their insanity is the truth and their unproven treatments work. You’ll find support groups and petitions of people wanting their disease recognised despite no tests showing any abnormality.
All I want to say is that every time a doctor honestly tells someone “I don’t know what is wrong with you” that void is immediately filled by less honest people wanting to sell that person something that “may be effective”. Be cautious before falling victim to conmen. Do not believe that if your doctor cannot give you a diagnosis then Advertorials and internet forums will.
The placebo effect is a powerful beast and just because Dr. Smith’s Miracle Neck Splint, or tincture of elephant’s toenail made you feel better doesn’t mean that your symptoms were a result of inadequate elephant toenail intake. Beware that lots of people are trying to profit from the placebo effect. Stick with people who will be honest with you, backed by evidence rather than people who will sell you want you want to hear.
- And, finally, to the bad news. The last thing you need to accept is an unpalatable truth. It’s a truth that never makes it onto internet forums, or infomercials, because there’s no money to be made. The truth is that there is a huge number of syndromes that nobody understands, or can diagnose using tests or imaging, or can cure.
The only honest explanation for these syndromes is “We don’t know.” You need to accept the possibility that you may have one of these syndromes. And, it is for these people that your question is vital - “What am I supposed to do when doctors can't find what’s wrong with me?”
For these people, the answer is that at some point, when they are ready, they need to stop doing the same thing over and over. They need to stop asking “What is causing my pain?” All they will get is specialists telling them “It’s not being caused by my area of specialty” and, internet sites selling them placebo. The only truthful, but unhelpful, answer they will get is “We don’t know.”
Instead of a never-ending search for a diagnosis, they need to start asking “How can I better manage my symptoms so they are not ruining my life?” Forget about finding the cause and focus on trying to alleviate the suffering. The good news is that there is evidence that quite a few of these syndromes, such as Functional Abdominal Pain Syndrome, can be helped by the same psychological, physical and pharmaceutical strategies that help people deal with chronic pain.
My parting advice is to avoid the mistakes of others, which are mistakes that unnecessarily prolong suffering. From my experience, the majority of people with unexplained syndromes do not want to consider strategies to ease their suffering until they’ve completed every medical test known to mankind - usually a couple of times. Unfortunately, this results in years of needless suffering that could have been improved, if they’d just stopped asking “What is causing my pain?” and agreed to let us improve their symptoms.
If, after reading my ramblings, you’ve latched onto the idea of seeing another gastroenterologist, and a neurologist to search for nerve compression, and you’ve already searched the internet for Thyrosaki’s disease, but you’ve refused to consider the possibility of an unexplained syndrome that would benefit from chronic pain treatments, then I’d be very concerned you’re repeating these same mistakes. There’s no reason that you can’t seek help to better cope with your pain whilst you continue searching for the underlying cause.
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