A reader who was recently found to have a rare, serious condition sent Doctor D a question about visiting one of several doctors who missed the diagnosis:
It could be terribly awkward to have an appointment with one of them—me with all my new scars and a scary prognosis and them perhaps with their former, incorrect diagnoses of various benign conditions hanging in the air. I'd welcome a chance to let them know that I understand that it's impossible to get these things right instantly every time, and I have no resentment. But would it be better to just see a brand new doctor? Or would my former doctors want to see me? Or would they rather I melt into the ether and just let them forget it all?Human disease is extremely complex, and doctors sometimes miss the correct answer. Every doctor has had that “Oh crap! It was X? I thought it was Y!”
panic after finding out about a misdiagnosis. The unspoken truth is that doctors guess—a lot. Usually we make informed, educated guesses, but even good guesses can be incorrect. Unusual conditions can be hard to discover, and we often make several wrong diagnoses on the way to the right one.Doctor D has made some diagnoses he wished he could "do over" after using his Retrospectascope (D's only medical instrument that produces the right answer every time.)
So on behalf of all doctors, Doctor D wishes he could fall down and kiss the feet of the reader who sent this question! How gracious you are! We feel all patients demand perfection, and we work with imperfect tools and imperfect knowledge. Even the best care won't always produce the right answer—especially at the beginning. Your understanding and kind feelings towards your doctors makes even cranky Doctor D get misty-eyed!
So to answer your question: Go see your doctor!
I wouldn't advise you start out, “Hey remember me? You told me I had Y, when it was really a bad case of X?” Open with this and your doctor is likely turn sweaty and pale with terror. Doctors don't just fear lawsuits. We really hate letting you down. If your doc thinks you are angry about your care, he or she might suddenly become distant or angry too. (We doctors aren't very creative when it comes to covering our fear.)
But if you say, “I really appreciate what you did for me. I know that X is really hard to diagnose, and it often looks like Y,” your doctor might become so overwhelmed by your understanding that they may just break down and hug you. You could instantly become your doctor's favorite patient and be treated like family for years to come!
Have you ever been misdiagnosed? How did it affect your relationship with your doctor? Doctor D would love to hear your story in the comments!
9 comments:
You only have to read my blog to see a fine example of this question.
A summing up of the situation
Doc ignored my pre operative pleas's (severely constipated before having Bowel Surgery leading to rocks in abdo)No laxatives given.
Operated, sewed my Small Bowel to my wound, left for 14 days with High Grade Small Bowel Obstruction.
They used my passing(supps induced) of small rocks post obstruction site, as an indication for not having S,B,O in spite of faecal vomiting, gross distension, and C.T confirmation, oh and emaciation while on T.P.N.
I see you wanting to run now from this scenario...
The surgeon did, avoided me like the plague, refused to answer and questions and had her team also avoid my questions.
However if the surgeon had been honest, not shouted and screamed at me and treated me with dignity, all would have been forgiven.
Instead one was treated as a complete imbecile and abused verbally and....dadada the real kicker, Blamed for the surgery still not working :)
Gotta love that surgeon, I do know I'm not the first patient to come out of surgery permanently scarred by them.
Her team, actually recommended I get a second opinion and tried to tell me they knew she had done bad.
So different surgeon, however that group of surgeons are also in private practice together and I have no other options to go elsewhere in my country. My new guy is o.k though.
I'm sure the sun will shine at the end of this....Maybe? Also no we don't sue here, so I don't benefit from lying about this.
I think we all have to realize that even doctors put their pants legs on, one at a time, and even though they are educated they're human, prone to mistakes and oversights just like the rest of us. I always believed as a patient if you continue to have symptoms make your presence into the office, sometimes two or three times if need be to let your doctor know this is not normal for you, esp. if you're a newbie. I also think we're guilty of telling a doctor everything we've been going through physically for far too long instead of making an appearance to the office more often. I am enjoying your blog even if I don't comment all the time.
My husband went to 9 different specialists before he was finally diagnosed with Dermatomyostitis. A very rare, difficult disease to identify as its symptoms mimic so many other diseases. We love all the doctors involved in his care and treatment. We're just glad he was finally diagnosed. Now, if we could just get him into remission....
Yes, I've had a misdiagnosis in the family- it was my son. He had a terrible diaper rash, and I had mentioned it at every doctor's visit. I was quite emphatic about how bad it was, and he'd prescribe different things. Usually different antifungals, or whatnot. I just figured he knew best.
Fast forward: I have my daughter and she was born with a heart defect. She is seen by a different pediatrician and I asked if I could have my son see the same doc- to make things easier on me. When I took my son to this new doc, I mentioned the rash again. In pretty much the same way I had every time before that.
This doctor did something different: A culture.
Turned out it was MRSA and that's why it was not healing- ever- no matter how much antifungal or rash ointment I put on him.
I have to admit- I have no intention of ever seeing the previous doc again- I just.... never really liked him... and though I'm ok with giving a doc multiple chances with my own health, I won't with my kiddos.
Why waste your time seeing some random doctor that isn't a part of your treatment team? Go to the coffee shop, learn to knit, read some blogs, go out for a beer with an old friend, ride a bike, join a book club...You only have so much time on this Earth.
Nurse K, I see your point, but a person who has an orphan disease being treated by specialists may still have unrelated ordinary medical problems from time to time. You wouldn't see your cardiologist for an infected puncture wound, or get a routine Pap smear from your neurologist, or discuss hay fever with your radiation oncologist, hence the need to see an internal medicine doctor or gynecologist or PCP that you had worked with in the past.
All doctors make mistakes -- they're not gods or psychics. Once I had a violent allergic reaction to vancomycin, but it wasn't clear what was going on. It took a few tries before she figured out what was wrong but she was so earnest in working at it that I couldn't feel one bit angry.
On the other hand, I once had a minor but stubborn cellulitis in my leg. As a diabetic, that can get out of hand quickly. My then-doctor (different than above) refused to believe it was cellulitis because there was no clear break in the skin. 7 weeks later, after three dopplers because she was SURE it was a blood clot and two rounds of mild antibiotics "because you insist" the infection spun completely out of control. Very long story shorter: 2 weeks in the hospital, 3 days until they could find an antibiotic that worked on the now resistant strain, nearly lost the damn leg. And it reinfects at least once a year since then. Her reaction was, "Gee, I guess I was wrong." I wish I'd been able to think through the 105F fever & morphine to have responded, "Gee, I guess you're fired."
Honesty is the best policy with both parties. I have a son who has some ongoing medical problems that are difficult to pin down to an actual diagnosis. Yes, I could get frustrated and sometimes I do but you know what--so don't they. And, they share that with me. The beat themselves up for not being able to say that "X is because of Y". I respect them all the more for not telling me a diagnosis based on a guess. Truth is they don't know and they tell me that. We do tests, we treat X and we go from there. They listen to my ideas, they take my suggestions, they offer physician's for second and third opinions. They have treated him now for 5 years. When you have honest physicians that are not afraid of their own humanity and are willing to share with you that they don't know everything--that's when healthcare works and you become a team.
I had a frustrating experience with gall stones. I was having terrible horrible gallbladder attacks and was seen in the ER and doctor's office 5 times over the course of 5 months. They each said the same thing "sounds like gallstones but you don't fit all of the 4 F's" (fat, forty, fair, female). These visits were all within the same organization and they all said the exact same thing. It wasn't until I was on vacation and seen in the ER that that doc diagnosed me IMMEDIATELY and ran an ultrasound wand over my belly to confirm it. It was the fastest I'd ever been seen and solved almost a year of agony.
I was pretty resentful after that. I did not go back to that regular doctor. I suppose I should have written a letter. I felt that if she was always going to dismiss me if I didn't fit into a specific set of parameters I wasn't going to get good care.
OH - to make a long story longer. I later discovered, via the Google, that it's actually quite common for women who have a predisposition to gallstones (family history) to have attacks within 18 months of child birth.
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