There are times when doctors, very simply, are wrong. There are also times when they do not know the answer. Mistakes can and will happen, and your goal as a patient is to make sure you are properly diagnosed by your doctor.
Making sure you aren’t misdiagnosed!
If your doctor does not know what your condition is, they might refer you to a specialist(or different type of specialist) that they believe can help you. There is absolutely nothing wrong with that, and when it happens, you are best served following their recommendations and seeing where it goes.
There are also sometimes doctors who don’t know what you have but don’t want to admit it. If they tell you that maybe you didn’t develop properly as a child(yep, an endocrinologist told my partner that), or tells you that you have a ‘diagnosis of exclusion'(a very common statement to Functional Neurological Disorder(FND) patients, some of whom actually have other conditions like Ehlers-Danlos syndrome), the translation is that they do not know for certain what you have, and cannot think of anything else to try.
With those doctors, it’s time to go to a different doctor, preferably one that has more creativity, curiosity, and knowledge.
Sadly, there are also doctors who are woefully ignorant and have clung to some form of pseudoscience or straight up scams.
If you see a doctor whose medical statements don’t match with modern science, or who insists that there is only one treatment for your condition – their product – it is time to leave that office and never look back.
The most dangerous type of doctor and misdiagnosis, in my opinion, are not the scammers(who should be relatively easy to pick out from the crowd), but the doctors with pet diagnoses.
These doctors are working from a position of confirmation bias, where they twist the evidence to confirm their suspicions, rather than being willing to consider a variety of diagnoses for your symptoms.
I had a pretty horrifying experience with a doctor with confirmation bias, and I’m sharing this with you so you can learn to avoid these doctors and find professionals who are able and willing to dig in and help you get properly diagnosed.
My experience with a doctor with a pet diagnosis
Five years after my diagnosis, my urinary symptoms really hadn’t changed a whole lot. The urge incontinence had gone down, but I was dealing with a lot of leakages, and to make my life more interesting, I’d started spotting pretty regularly between periods(which led to a pretty horrible misadventure with a fertility specialist).
My primary care doctor and I discussed it. One of the most dangerous things for people with conversion disorder is assuming that something was a conversion symptom when it really was a physical/mechanical problem, so I thought a double-check was appropriate.
He recommended that I see her. When I saw her, I laid out my situation, including that I knew I had conversion disorder, and that I was checking to see if there was another cause for my incontinence, and she immediately responded that she suspected I had interstitial cystitis.
Red flag 1: They immediately know what you have without testing
There are some cases where instant recognition is helpful or reassuring, My sisters’(teenagers at the time) had what we all assumed had been a bout of the flu, but they didn’t stop coughing afterward.
They were coughing so badly they would occasionally vomit from the coughing, and it continued for months. Their pediatrician referred them to a rare disease specialist because he wasn’t sure what was wrong. The specialist happened to be older and instantly recognized their cough.
They had whooping cough, despite having been vaccinated against it. The pediatrician hadn’t seen a live case of whooping cough in his career since the condition occurs very rarely in this country due to vaccinations, but the older doctor knew the sound and thanks to that referral the mystery was solved.
When my aunt went to the same pediatrician because her young daughters were sick(the younger one hadn’t been vaccinated yet, and the older hadn’t yet completed her booster shots, I think), he immediately recognized the cough as being the same as my sisters, so he was able to diagnose and treat them, correctly, right away.
There are also times when doctors recognize a pattern, so the moment you mention a set of symptoms, they are pretty sure they can identify your condition.
Rarely, they will be so familiar with the condition that they can put things together in ways the other doctors didn’t, and if so they can clearly describe why they know this is what you have(like the specialist recognizing the cough), but in most cases, they will then usually do an additional test(sometimes an observation, sometimes a blood test, sometimes something else) to confirm their diagnosis.
There are also times, like this debacle, where the doctor has a preconceived notion of what you have, and use their confirmation bias to selectively understand your symptoms in order to diagnose you with the condition they already decided you have.
These are the doctors to avoid like the plague, and who are most likely to misdiagnose you.
This doctor wanted me to have interstitial cystitis. It was her pet diagnosis(more on that further down), and so she took the information I offered and interpreted it so that her conclusion that I had interstitial cystitis was justified.
She immediately assumed that I had been misdiagnosed as having conversion disorder, completely ignoring my statement that I knew I had that condition(and apparently she also dismissed the fact that I was rocking back and forth because of it).
She explained that most doctors missed interstitial cystitis because it almost entirely affected women and many male doctors dismissed its existence (there are many conditions where this is the case, sadly).
Interstitial Cystitis is a very real condition and is often the cause of urinary problems and abdominal pain issues that are frequently blamed on UTIs(but weren’t cured by antibiotics), stress or dismissed as a psychogenic issue(conversion symptoms are considered psychogenic).
She informed me that if I had interstitial cystitis I would need to go on a diet, but it would get better and make the (nonexistent) pain, urgency, and leakage go away.
I just wanted to feel better. She gave me hope that it could get better.
At that time I didn’t know my urinary symptoms were treatable.
She also didn’t explain that interstitial cystitis is manageable, not curable. I swallowed the hope, and believed her, despite the fact that I had no abdominal pain(she said sometimes people don’t have pain), and it didn’t entirely feel right(I already knew that I had a psychogenic condition, for sure).
She told me she could test for it, but I’d need to schedule the testing. So I did. The next available appointment was several months away. She did not give me details on the testing, just that it needed to be done in her office.
Defense strategy 1: Do your research on the suggested condition
Knowing that the more medical knowledge I had, the better able my body was to mimic symptoms(another lovely aspect of FND), I decided that doing research on interstitial cystitis was a bad idea.
I love to research and better understand things, so I wasn’t entirely comfortable with that choice, but it seemed healthier and better to me to delay my research until I knew if I had the condition.
The last thing I wanted to do was get misdiagnosed because my symptoms ended up imitating the condition too closely. Yes, that happens with FND – the dark side of the placebo effect. Fortunately, most people do not have that issue(though hypochondria is definitely a thing too).
Since that experience, I make sure that if a diagnosis is suggested, I do my own research on it to see if it makes sense to me and fits my knowledge of myself and my body.
When you read about their proposed diagnosis be sure to read up on what they know about the history of when and how the condition appears.
To make sure you have good information, google just the name of the condition, then select a high-quality site’s information page on it. Wikipedia often has decent information, but you will be better served by looking at the Mayo Clinic‘s page on the condition, or another large research hospital’s explanation. You also can look for nonprofits built specifically around that condition, as they are also likely to be subject matter experts. If you are exploring mental health issues, psychology today might also be a good resource.
What you don’t want to do is look at some random person’s site or something that pops up as an ad.
You want a page with illustrations, papers being cited, and other indicators that they are highly knowledgeable. Many rare conditions have research hospitals that focus on them specifically, and those are likely to have the most up to date information.
Read the information carefully(if the vocabulary they are using is overwhelming, try a different site to start with).
Does your history match the suggested history?
Are you in a listed at-risk group?
If so, when you read it, does it feel like it’s describing you, or are you hit with a feeling that it doesn’t make sense?
If it feels like you are reading your own story, then testing for that condition is absolutely the right move(even if the testing turns out to be scary).
If there are a lot of details that don’t line up, that doesn’t necessarily mean the doctor is wrong(sometimes people present differently, which makes diagnosis harder), but it is something to ask the doctor about when you go in.
As an example of correct diagnosis despite not fitting the history, Al(my partner) has been diagnosed with osteoporosis, which is generally a condition you’d expect somebody’s grandma to have. Al, being neither female nor elderly, doesn’t fit the expectations.
However, the way the bones in his hip broke(acetabular fracture), especially with such minimal force involved(he fell from a standing position, rather than being in a head-on collision, or falling off a five-story building), the doctors wanted to check his bone density(the primary symptom of osteoporosis).
His bone density turned out to be very low, so he does have osteoporosis. We are now searching for the cause of the osteoporosis.[UPDATE: we figured it out]
If the bone density test hadn’t been done, he probably wouldn’t be doing what he needs to in order to treat the osteoporosis(regular exercise, eating lots of calcium, taking vitamin D supplements, and searching for a further explanation).
If you are concerned that your doctor is giving you an inappropriate test, ask your doctor to explain why they think this diagnosis fits your symptoms. If it makes sense or is the only thing they can think of, it’s time to explore what the test is.
Defense strategy 2: Know your testing procedures in advance
While you do your research on the condition, they will often mention the process used to test or confirm the diagnosis. Sometimes it’s a blood test, or utilizing a urine sample, or some form of scan.
Sometimes there is nothing definitive(as is the case for interstitial cystis), though there can be additional indicators to check for.
If you know what current medical science says is the most accurate test, you are prepared for what you need to go through. And, if the doctor is using a different method, you can recognize that when they prepare you for the testing and ask them to justify their decision.
I learned my lesson. Here’s what happened when I failed to do that research:
All I was told before the testing was that I’d want to take a medication that was designed to numb the bladder and vaginal area. I took it before I went to the office.
After instructing me to get into a hospital gown, I was informed that it involved a catheter and using that catheter to fill my bladder. Twice. I was to report how much pain I was feeling in and around my bladder as the test was being performed. I nearly turned around and left when the details were explained to me(I should have).
I asked if that was really the best test and her staff assured me it was the least invasive test. I decided I didn’t want to know what the more invasive test was(huge mistake), given the intimacy and discomfort I was anticipating.
In my defense(I mean, you’d want to walk out too, right?), I had previously had somewhat similar testing(referred to as urodynamic testing) done by a urologist, but it only involved filling my bladder once(to measure my capacity), and then gathering some additional information through sensors(attached to connection points in muscles) when I peed the water out.
That process had been slightly uncomfortable and felt strange, but the sensors were just small adhesive strips with wires coming out of them, and there was no pain to be measured.
I also didn’t have movement symptoms when he ran that test.
What she wanted me to do sounded much worse, and really didn’t make a whole lot of sense to me, but I believed her – after all, she is a recognized medical professional, and my GP had recommended her.
I should have pushed more.
The testing nightmares are made of!
I got catheterized, which, as you can imagine, is a very special and uncomfortably intimate process. I was sitting on a commode with the catheter hanging down(after I had done my best to empty my bladder – another thing I was having issues with), and I had to sit there as they pretty much inflated my bladder with water.
As you can imagine(or maybe have experienced) catheters are uncomfortable and painful in their own right. And that much liquid going through is a strange and uncomfortable sensation(liquid is supposed to go out, not in!).
The nurse, who mentioned she had interstitial cystitis(more on that later) sat next to me and kept inquiring about how I was feeling, how severe my pain levels were and did I have any other sensations.
After the first few minutes, my conversion symptoms were really going to town, so my whole body was pretty much vibrating from my attempts to hold still and not jiggle the catheter.
It was pretty nightmarish.
Then, when they finally decided I was full, they removed the catheter(which, as you can imagine, is also painful), and had me pee out all the liquid. I was trembling, rocking, and shaking, and it took a while for me to get anywhere close to regaining control over my symptoms.
The nurses went off and did other things, while I sat on the commode, half-naked, and cried.
After I cried myself out and got some control back, the nurses returned, and changed the substance that was going into my bladder and repeated the process.
Putting the catheter in was worse the second time around, and I was dealing with really tight muscles(part of my pelvic issues), so the catheter kept getting more and more painful.
The nurse kept asking me how I felt, and I kept giving her relatively low answers – because I could differentiate between pain in my bladder(which was consistently low) and the pain from the inserted catheter!
That pain lower down was increasing, and I was getting more and more uncomfortable.
My conversion symptoms(like I said, I knew I had a psychogenic condition) were mainly coming out as movements at the time, so I was using most of my concentration to minimize how badly I was shaking because that was guaranteed to hurt a lot.
I didn’t want to risk having to go through the whole thing again, because I knew I couldn’t take it. So I kept going, carefully differentiating between my bladder discomfort and my discomfort lower down.
Honestly, this is one of the best ways to torture somebody that I can think of.
Nobody should be treated the way I was.
Red Flag 2: The results are subjective and open to interpretation
The nurse at some point actually said to me ‘you’re in more pain than that!’ and apparently wrote down a different number than I told her.
The point of the testing was to see how painful the substances were in my bladder(so many levels of subjective!!), and the nurse disagreed with my statements and wrote her own interpretation(thinking that’s test falsification, what do you think?)!
When they finished filling me up, I was pretty much in agony, and all I wanted was to get out of there. They removed the catheter without fully deflating the little balloon that was anchoring it(which really, really hurts), and then told me I could now pee out that substance, and when I got dressed, I could talk to the doctor.
I basically started convulsing at this point because I finally didn’t have a needle in my unmentionables, and once I got that back under control, I peed and sighed in relief. I was still shaking pretty badly, and just barely managed to get myself dressed again.
I rocked and slammed some more, and eventually managed to limp into the doctor’s office. She sat in her comfortable chair, while I very gingerly approached mine(sitting wasn’t super appealing), and asked how I was feeling.
I was shaking, and slamming, and limping, and crying a little. I kept going into long full body spasms from the humiliation and anger and pain and embarrassment.
I readily told her how uncomfortable I was, and she informed me that I did, indeed, have interstitial cystitis, and my pain and thrashing around confirmed it(bear in mind, I would also thrash around after any form of long day, or experiencing an emotional trigger, or forcing myself to stay still for a long time).
The second liquid had apparently been a mild acid, and so the fact that I was in more pain and discomfort while they put it in was the proof that I had Interstitial Cystitis(as opposed to my being overwhelmed by pain from having two different catheters put in the same day, and the whole bladder full of acid thing, a long stressful day, and a couple of months wondering about the test).
Trembling, I asked her what that meant and what the next steps were. There had to be a treatment plan, right? It was curable, right?
She smugly informed me that it was incurable, and I would need to be on a low-acid diet for the rest of my life, and there were some pills I’d need to take daily from now on. She then handed me the list of what I could and couldn’t eat.
That list set me into another flurry of shakes, as the list of what I should no longer eat was huge and comprised such a large part of my diet.
No tomatoes in any form, ever. No Indian or Mexican food(too spicy), nothing with preservatives(!!).
The only fruits I was allowed to eat were melons(except cantaloupe- too acidic), pears, and apples.
The vegetables were less limited, but there still were some important options missing.
My primary source of vitamin C had to be bell peppers(fortunately I like them, and no, I didn’t know they were high in vitamin C either until after this misdiagnosis).
That ‘no preservatives’ suggestion translated into no prepared meals, no fast food, no sandwich meat, no salt. Looking at that, I saw my food options vanish, my hopes shrivel, and a life of bland and boring meals set out before me. I stumbled out of her office in tears.
Red flag 3: everybody in the office has the condition
After telling me about how limited my food options would be for the rest of my life due to this incurable condition, she shared that she too had interstitial cystitis. As I stumbled towards the door to exit the hallway, a different nurse from the one who tortured me came by and told me she understood…she had interstitial cystitis too!
Later when I could think more clearly, I remembered one of my torturers had also mentioned having interstitial cystitis. It felt really unlikely to me that the doctor and most of her staff would all have the same rare condition. I was given another numbing pill and went home in shock. It took me days to recover
Red flag 4: The treatment doesn’t help
I went on the diet, and stayed on it for over a month, doing my best not to be miserable about my very limited food options. I did my research on the Interstitial Cystitis diet, found suggested recipes(most of which focused on adding lots of different spices to food to make up for not being allowed to use salt.)
I was unable to order out, grab a slice of pizza, or get myself a sub.
My bladder problems stayed the same, and I felt pretty crappy.
I was also working, so didn’t have a lot of energy to do a lot of food preparation work or deep research into the workarounds and recipes that other people with interstitial cystitis had suggested. Eating became a chore, not something enjoyable.
The diet did nothing to help me, and Thanksgiving came and went with me looking longingly at all the food I was not allowed to eat. I resolved that I had to do something before Christmas, as I didn’t want to miss the deliciousness that is the holidays!!
Defense strategy 3: If it doesn’t feel totally right, get a second opinion
I should have done this right away, of course, but at the time I was too cowed and traumatized to consider it. The way my symptoms responded to the treatment I received left me more frightened of seeing doctors(especially new ones), and more apt to distrust recommendations.
However, that very sad thanksgiving pushed me into action. I did some searching and a friend recommended a urologist affiliated with Columbia Presbyterian, the same hospital Dr. Mazzoni(who diagnosed my conversion disorder/FND) worked for(this made me feel much better, a hospital which I knew had at least one amazing doctor).
I made the appointment and saw her on December 15. I had been able to communicate in advance that I wanted a second opinion on my diagnosis of interstitial cystitis, and so after some conversation(where I learned that the test done by the urogynecologist was definitely not the gold standard for testing for interstitial cystitis), had an internal exam using a small camera(a cystoscopy). I only needed to take off my bottoms.
She inserted the camera, guiding it in with the attached cable. Yes, it hurt a little but I made it through, and once she got the camera into my bladder(which took much less time than just the first round of the other testing), she informed me that not only did I not have interstitial cystitis(she saw no sign of anything resembling an ulcer), there was no sign of any physical problems with my bladder, though I was a little dehydrated(when you constantly need to pee, it’s really hard to want to ingest liquids).
I could have hugged this doctor, I was so relieved to be off the diet(and of course that I did not have an incurable bladder condition).
She confirmed that the diet and the pills were completely unnecessary, and informed me that the proper treatment for my incontinence was biofeedback and bladder retraining, which she could set up if I was interested.
I tried the treatment, but doing a regular commute up to the city was too much for me(she wanted me in a couple times a week).
About six months later, when I was no longer working, I did some more exploration and found a pelvic floor PT who worked near me and spent a year or two going through bladder retraining and biofeedback, emerging from that treatment with more control than I had had in over 5 years!
I never needed to go back to a urologist, or I would have seen her again.
Conclusion: Lessons learned from being misdiagnosed by my doctor
While doctors are considered the subject matter experts when it comes to the field of medicine, not all doctors are not created equal.
Many doctors have their own biases and perception issues and may try to push their beliefs onto you. With each doctor you see and tentative diagnosis they make, put their suggestions through a logic test and be open to asking for a second opinion.
The more you know about a condition, the better prepared you are for testing and potential treatment, and if you do end up with a biased doctor you have a better chance of recognizing them before you go through anything too painful(including loss of time or money).
Generally speaking, the more imprecise the criteria they use for the diagnosis, the easier it is to be misdiagnosed.
Also in most cases, there is additional diagnostic material that can be used to confirm the diagnosis.
Look for tests that focus on the presence or absence of a particular substance, or observations the doctors make(including scans, x-rays, and imagery collection).
Blood and urine tests are also often accurate and relatively painless.
Yes, there are conditions that require more uncomfortable testing, but those can often be done after other options are completed – they generally should not be the first course of action.
Do your own research and learn what the standard testing is for any condition they think you might have, and check in with the doctor if they focus on an alternative test or strategy.
If something feels wrong, it often is, and the more differences there are between your experience and the description on the medical sites, the more skepticism you can and should express towards their diagnosis process – and the more important it is for the testing to be appropriate and minimally invasive.
You always have the right to refuse testing, and you have the right and ability to question your doctor’s suggestions.
If something your doctor tells you doesn’t make sense, make sure they explain it. You have every right to know about alternative means of testing, and knowing your options is always helpful.
Keep your eyes peeled for doctors with pet diagnoses and seek out doctors who love solving puzzles(sometimes referred to as diagnosticians) if your condition seems to defy medical science.
You deserve the best possible treatment, and doctors are more than capable of being mistaken or biased.
Do you have additional red flags or defense strategies when it comes to being misdiagnosed? If you do, please share it in the comments!