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Have You Been Misdiagnosed?

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Missed diagnoses are harming or killing 150,000 patients every year. How can so many avoidable mistakes be happening?

Most of us go to a doctor or hospital because we are having a problem. If a symptom is causing us a great deal of discomfort or if it does not go away after a reasonable amount of time, chances are that good that we will want a health professional to figure out what’s wrong and come up with a treatment strategy that will help us recover.

What Are the Reasons for Missed Diagnoses?

Diagnosis is one of the most fundamental skills a medical student is supposed to master and then hone as a resident and practicing physician. We assume that all those arduous years of training have prepared doctors to figure out exactly why we are having symptoms. How well do they do at this essential task?

We were shocked to learn a few years ago that the answer to this crucial question is not very well. Even worse, it is a third rail issue. Researchers hare steered clear of this controversial topic. Professors in medical schools, hospital administrators and government regulators have pretty much ignored the problem. But in 2009 David Newman-Toker, MD, PhD, and his colleague Peter Pronovost, MD, PhD, blew the lid off this scandal with a groundbreaking article in the Journal of the American Medical Association titled, “Diagnostic Errors–The Next Frontier for Patient Safety.”

In this research they revealed that “an estimated 40,000 to 80,000 US hospital deaths result from misdiagnosis annually.” During a radio interview with us they subsequently confided that the number published in JAMA was probably low and a more realistic figure was more likely 100,000 hospital deaths each year from missed diagnoses.

Misdiagnosis in the Doctor’s Office:

Keep in mind that these were missed diagnoses in hospitals. What about misdiagnosis in your doctor’s office? Until a week ago we had no good idea about diagnostic errors in a primary care setting. That all changed with an article published in JAMA Internal Medicine (March 25, 2013). Until this study there was not much information about “Diagnostic errors (missed, delayed, or wrong diagnoses)” in a family practice clinic or internist’s office. Now we know the problem is worse than we imagined.

Researchers studied two large primary care practices. Site A was a large urban Veterans Affairs facility with 35 PCPs (primary care providers). Site B was a private health care system with 34 family medicine PCPs. By tracking electronic medical records the researchers were able to identify patients who saw a primary care provider and within two weeks either had to come back to the doctor’s office or go to an emergency room or be admitted to a hospital. They then analyzed the records of such patients to see if there had been a diagnostic error.

Of the 190 cases where diagnostic errors were discovered, most “had potential for moderate to severe harm.” Here are the some of the common missed diagnoses:

  • Kidney failure
  • Pneumonia
  • Cancer
  • Cellulitis
  • Congestive heart failure
  • Compression of the spinal cord
  • Urinary tract infection
  • Adverse drug effect
  • Heart attack or severe heart problem

When such serious conditions are missed in a primary care setting they will be often be treated incorrectly and the outcome can be delayed recovery, severe complication or death.

According to an accompanying commentary by Drs. Newman-Toker and Makary, “more than 150,000 patients per year in the United States might have undergone misdiagnosis-related harm.”

Why Are There So Many Missed Diagnoses?

Why? Why are there so many missed diagnoses? The researchers suggest that there are breakdowns in communication. Time pressure almost assuredly interferes with the process. Doctors are trained to make quick decisions based on obvious symptoms. Doing so can divert their attention from the actual cause of the problem. These researchers documented that there were serious flaws in history taking. Patients may not have gotten to tell their stories completely. And doctors did not connect the dots accurately. Moreover, doctors do not always communicate with each other well to make sure that data from tests are transmitted appropriately.

The real shocker in this study, though, was the lack of what is called a “differential diagnosis.” In 80% of the missed diagnoses, doctors failed to follow a time-honored medical practice of considering all the possibilities and prioritizing them appropriately until the correct diagnosis was reached.

Bottom Line:

Far too many patients are misdiagnosed, either in a doctor’s office or in the hospital. These mistakes lead to inappropriate treatment and that causes “serious harm, permanent damage, immediate or inevitable death.” The authors of the study call for “patient empowerment and engagement in the diagnostic process.” We couldn’t agree more.

In our book, Top Screwups Doctors Make and How to Avoid Them we have a list of questions to ask your doctor the next time you have a problem.

Top 10 Questions to Ask to Reduce Diagnostic Disasters:

  1. What are my primary concerns and symptoms?
  2. How confident are you about this diagnosis?
  3. What further tests might be helpful to improve your confidence?
  4. Will the test(s) you are proposing change the treatment plan in any way?
  5. Are there any findings or symptoms that don’t fit your diagnosis or that contradict it?
  6. What else could it be?
  7. Can you facilitate a second opinion by providing me my medical records?
  8. When should I expect to see my test results? Will you call with them, or will they come by mail or electronically?
  9. What resources can you recommend for me to learn more about my diagnosis?
  10. May I contact you by e-mail if my symptoms change or if I have an important question? If so, what is your e-mail address?

You can learn more about how to avoid diagnostic mistakes in the book. We provide details about the Top 10 Reasons Why Doctors Screw up Diagnoses and give you the tools you need to prevent this from happening to you or someone you love. You will also find out more about the most commonly missed diagnoses so you can be prepared. Here is a link to more information about the book.

Here are some stories below about the implications of such errors from real people.

This came from J.L.B.

“Several years ago my wife had a bad case of bronchitis. Our family doctor put her on an antibiotic. She felt better for a few weeks and then she started coughing severely again. We went back to the family doctor who is a great person and competent doctor. He was going to put her on another kind of antibiotic. I am an accountant and as an analytical person I asked him a sensible question which was ‘Why is my wife coughing so much after going through a round of antibiotic. Shouldn’t some more tests or x-rays be taken?’

“He thought over my statement for a minute and then ordered a chest x-ray. What the x-ray revealed was that my wife had a mild case of pneumonia. There was some fluid in the bottom of her lungs which showed up on the x-ray. The doctor then ordered her to stay in bed for several days and prescribed another antibiotic. Bed rest is mandatory for pneumonia whereas a person can be up and on their feet if they have bronchitis.

“If he had not discovered that she had pneumonia, she would have been on her feet and getting worse and worse. After that event whenever we went to the doctor he would ask me if I had any questions. He had a new respect for my observations/comments. He had almost made a wrong diagnosis which could have resulted in very serious situation for my wife.”

“This happened many years ago and somehow I survived. I was having severe stomach pains which went around to the front and I was nauseous for days. I was about 20 years old and had been having “bouts” for the past couple of years on and off but with increased frequency.

“The military doctor I went to did not order any tests because he decided that I was just lonely for my new husband who was stationed in Japan. How did he come to that conclusion? He had a daughter who was lonely for her new husband as well.

Within a few months I went overseas and got pregnant. I had a daughter and fortunately had no attacks during my pregnancy. But within 3 months of giving birth I had such an attack that I literally had to crawl on my hands and knees to get help from a neighbor.

“It turns out that I had gall stones almost the size of golf balls and was extremely lucky that I had not had an attack during my pregnancy because both my baby and I could have died.”

C.D.G. volunteered this story:

“My 86-year-old father went to three specialists (cardiologist, internal medicine and pulmonologist) in November complaining of shortness of breath and fatigue. All three told him he was fine. The cardiologist, who had been treating Dad for an irregular heart beat, told my sister he was concerned Dad was showing signs of dementia. The internal medicine specialist prescribed an anti-depressant.

“He collapsed 10 days after seeing the pulmonologist, 20 days after seeing the cardiologist. The emergency room team said he had pneumonia and was almost at end stage congestive heart failure. He also had pneumonia. He died 10 days later.

“I wrote the doctors two weeks ago asking what tests they performed to determine he was fine. Haven’t heard back and am guessing I won’t.”

The stories above reinforce the research just published in JAMA Internal Medicine. Pneumonia and heart failure are frequently misdiagnosed. Don’t let it happen to those you care about. Be assertive! Ask about the “differential diagnosis” and make sure the doctor tells you what else might be causing your symptoms (besides the “obvious”).

We do not want you to become a statistic. Missed diagnosis is one of the more common causes of death in America, right up there with strokes and adverse drug reactions. It shouldn’t be. These are preventable errors. We hope you find our book helpful in avoiding medical mistakes.

Are People Concerned about Misdiagnosis?

In a fairly recent study, investigators scoured the web to see what health commentators were saying about this topic (Giardina et al, Diagnosis, March 2016). They found that diagnostic errors were very rarely mentioned as a weakness of the American health care system. Nonetheless, many were able to offer personal stories of problems with diagnosis.

Researchers are working on ways to allocate responsibility for follow-up on tests (Kwan & Singh, Diagnosis, Sep. 2017). This is critical, they point out, “to ensure that every test result is sent, received, acknowledged and acted upon without failure.”

Have you experienced any missed diagnoses? Share your story below. We hope it will empower other patients so that they can take more control over their health.

Revised 5/10/18

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About the Author
Joe Graedon is a pharmacologist who has dedicated his career to making drug information understandable to consumers. His best-selling book, The People’s Pharmacy, was published in 1976 and led to a syndicated newspaper column, syndicated public radio show and web site. In 2006, Long Island University awarded him an honorary doctorate as “one of the country's leading drug experts for the consumer.” .
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I coughed severely all night on a Sunday. On Monday, I went to the local ER and got treatment from a P.A. She told me I had severe bronchitis and I was given a script for an inhaler. I should feel better by Wed. and call my primary. I trusted this P.A. and did not call the primary doctor. BIG mistake!

By Friday, I had trouble breathing and could hardly walk. I phoned up the primary doc and they had me come in immediately. I was taken to a room where the doctor told me I had been having a heart attack for a week. They rushed me to hospital where I received 3 stents. The next year I needed triple by-pass. For me a real horror story.

My mother had a stroke, and I was told she had six months to live.
After 6 months she didn’t seem that bad, so I dialed 1-800-famous clinic in Minnesota.
Turns out there are two types of stroke: bleed or blocked. A coin flip chance the MD’s would get it correct. The famous clinic wrote!!! original Neurologist and Internist and told them Mom (80 years old) was blocked not hemorrhagic as they had diagnosed.
They took offense, evidently, as they both refused to see her upon her return; she lived another 13 years on a baby aspirin.

You must be your own advocate, and sad to say I now admit I have become cynical…

For some help: if you don’t know about pubmed.com check it out. The top of the NIH Databases with 25million qualified articles. Very well coded, very responsive to non-MD/PhD questions. Hint: pick a topic, get a list of abstracts, then pick one that sounds close, then go to the bottom of the page and read the conclusion.
Best
rdub

Medical errors, misdiagnosis, and failure to diagnose seem to be par for the course over the past several decades. My own journey through the joke called the US medical *system* began while I was in high school. First misdiagnosed with TB and then a heart murmur. After many years of relative health, I evidently had a bad PAP test in my late 40s — however, the doc’s office sent me the routine letter that everything was fine. When I returned for my next annual check-up and PAP test, the nurses were horrified and asked why I had not returned immediately last year when the bad results had first been reported. As it turns out, they were at fault for sending the *all’s clear* letter and not the please return at once letter. In fact, they should have called me! Luckily the problems were able to be corrected with outpatient surgery and no chemo or radiation.

Then there were the 8 ER admission in a week’s time for arterial nosebleeds that FINALLY resulted in 2 emergency surgeries before they were solved. Then there was the double pneumonia caused by an anesthesiologist’s errors that was then treated with fluoroquinolone antibiotics which resulted in permanent nerve damage. At present, I’m looking for a new GP since the current doc is clueless about my current medical issues and has no ideas of what else can be done. I’ve come to HATE most of the medical professionals I’ve encountered.

My PCP (who I just love) has wanted to put me on statins over the last several years. Knowing about the possible severe side effects, I keep saying no. My lab results are not constant. They vary even though they are in the high range. We both agree it is a lifestyle issue, but don’t know what it is, and no tests or further study ordered. I’ve seen 4 different endocrinologists, who just kept messing around with commercial thyroid meds, and refuse to test hormones, adrenal glands, etc. A few months ago, I tried a functional medicine MD (who has thyroid issues, too) who recently seriously upped the dosage of my compounded thyroid medication. When tested 1 month after the new dose, indications were for a very large increase in cholesterol/lipid readings, and a huge jump in TSH – went up to 25! I immediately asked for a new lower prescription because the larger dose was not working for me. When he called the prescription in, I discovered he UPPED the dose again! I convinced him to backtrack to the original lower doses, then quit seeing him.

I am now continuing my journey to find out the root causes of the high lipids and thyroid issues with someone who actually listens and takes the time to listen to me. My issues may or may not be life- threatening, but I have been on a 10 year journey to get to the causes. I recently found out I have food sensitivities in addition to my already-diagnosed food allergies, which could be/probably is the contributing factor. We have a plan to get to the bottom of this (literally, by studying what is going on in my gut). It would have been easier to just take the statins. But the root causes would still be there. After all this time, however, I may just raise the white flag and surrender.

Doctors bury their mistakes!

A year ago in December I saw my PCP who is also a renal specialist. I have chronic kidney disease so he keeps an eye on that.

I complained about feeling very tired and feeling as if I were always gasping for breath, and mentioned that I had felt a small lump in my right breast. I had lost about 10 pounds unintentionally, too.

He had me follow his nurse around the building with an oxygen sensor and it showed that I was indeed low on oxygen. I don’t know what his official diagnosis was, but he prescribed oxygen 24/7. I got the machine and felt somewhat better, but I was concerned about the lump so I had a mammogram. (When they discovered I had a lump, they had to okay the mammogram with my doctor!) They found a lump in the right breast as well as a smaller one in the left breast.

After visits to specialists for this and that, it was determined that I had cancer in both breasts that had metastasized to one lung.

If I hadn’t gone ahead on my own with the mammogram, I would be dead today. What if the doctor had ordered tests right away to see what was wrong?

My mother was diagnosed with Parkinson’s by her PC and started on a number of meds. She was seen by 3 different neurologists who all said “it wasn’t typical” but couldn’t come up with a better diagnosis, so left her on the meds. After my step-dad died, I took her to a new neurologist at the suggestion of a new PCP, and he ordered a CT scan of her brain. Turns out she did NOT have Parkinson’s at all, but had had some small strokes to the same part of the brain. After taking her off most of the meds, my brothers remarked, “Wow, we have mom back!”. Why did none of the other doctors bother to do further testing when they remarked that it was not “typical”?

I was diagnosed with asthma and treated for 6 years.I had always doubted this diagnosis because I had a Mother and sister who had asthma and my problem did not mirror their symptoms. When I started having a breaking voice and constant clearing of my throat and was unable to sing anymore, woke up at night coughing and choking. I went around my pcp and went to a asthma specialist. I told him I didn’t think I had asthma he asked me what the breathing test had shown. I had never been given a breathing test I told him inhaling wasn’t the problem I felt like someone had me by the throat, he did a test. When he came back in the room and told me I was right I didn’t have asthma and he was UN-diagnosing me I felt relief and wondered how much damage the steroids I had been given over time had affected my body! He told me if he was right I was going to love him in about 2 or 3 days. His diagnosis was laryngoharyngeal reflux or LPR, resulting from my GERD. He sent me to a speech pathologist to scope my vocal cords and advised me to take my Nexium at night instead of the morning and to raise my bed 6 inches, watch what I eat (foods that caused me indigestion) and to not eat 3 hrs before bed. I also had a severe sinus infection I had been having them one on top of the other. He prescribed a temporary course of antihistamine and also advised I start using nasal saline rinse, start taking 1000mg of Vit C and 50 mg of zinc until this infection passed then to do it if I felt something coming on.
He was right in 3 days I LOVED him! Not only was the sinus infection almost gone and to date this was 10 or 12 years ago I’ve not only not had another sinus infection but I’ve not had so much as a cold in that time, not even one!!!! The speech pathologist said my vocal cords where rounding off from all the throat clearing and the acid rising in my esophagus every night she suggested I also add to my doctors recommendations extra water to clear the mucus I was already drinking at least 32oz a day.

END OF PROBLEM and on a separate note I changed my diet lost weight and following your websites advice am now off Nexium.

second opinion is not so easy where i live. I found that if go to a gastrologist in a medical group and it does not work out – the other doctors in that group will not see me. Or per their rules it has to be 5 years between seeing the original docotor. OR some do not take medicare. Or i call a dr and it is Feb and i am told-we have already accepted all the medicare patients we are going to for this year.
or If you have ever seen a gastrologist anywhere, we will not see you .
Or if you have seen a gastrologist and want to see me and then see another one.
the doctor will NOT ever see you again. and they check the hospital lab records to make sure of who you have seen in the past.

anyway i have still after yrs of going through all this still have the same severe constipation, bloating that looks like i am pregant. have tried amitiza, linzess but none seem to fit me because it causes dry mouth and i get periodontal disease from these meds.

or a doctor will spend the visit looking at his computer saying go ahead and talk , I can hear you. then turns around and ask a question of which i just told him what would have been the answer to it. so he was not listening. Pokes his finger into my body and says i do not feel anything hard there. Instead of trying to feel the hard place .
says you have IBS and does not test you for it.

I drove 3 hours round trip to see a new doctor and the Dr. told me recently no amitiza will not give you dry mouth . 1 tablet and i work up with cotton mouth. and Yes dry mouth is a side effect per the googled list of side effects.

did not test for my chronic intestinal yeast infections. which sometimes i pass blood. which i think is caused from the backed up food in stomach.

also where i live trying to get a gynocologist and there are many in town. Try to find a one that fits me. not so easy. a very large percent of them will not see anyone that takes medicare. Also i have to drive 3 hours round trip to find a pelvic pain doctor that would help me. Why? because the one that i saw for years and did my hysterectomy here told me do Volunteer Work = her cure to my health issue!! I tried another one here. No did not help or correctly diagnosed actually ignored my health concern.
I saw a doctor a long drive away and he correctly diagnosed me.
he is for pelvic pain only.

anyway not sure this has helped anyone, but i hope it has with this posting.
Why so much anxiety? it is from but the doctor frustration adds to my anxiety. and then they wonder why i have anxiety???

God help us all. as doctors seem to be more interested in their computer than examining and listening and hearing what a patient has to say. God bless the doctors that take medicare. They realize that helping people is the purpose of being a doctor than how much they can put in their bank account.

To help a human being is a priviledge and an honor.
To turn away or treat a human being like a inanimate object when needing help is a disgrace.

I just read your conversation, and my heart goes out to you. I am 75 years old and am healthy as I can be. My Mom, bless her soul, educated me that “Cleanliness is next to Godliness.” I do not have headaches, digestive problems, dental problems, etc., and I owe it all to the use of my fountain syringe. I know that this is a very controversial topic, but for me, all it takes is 2 quarts of God’s water in my enema bag and all of my health issues are completely resolved. Enough said.

Three people in my immediate family died before their time because of a misdiagnoses. All three had cancer – my dad’s prostrate cancer was diagnosed as kidney stones – my brother’s lung cancer as pneumonia – my aunt’s breast cancer was “the lump in her breast was nothing to be concerned about”. By the time they got a 2nd opinion it was too late, the cancer had spread.

I was misdiagnosed at three different ERs in 2008 with a non life threatening illness. It usually won’t kill you but can leave you with life altering, disabling residual symptoms. Originally diagnosed as cellulitis and Bell’s palsy, I had developed Ramsay Hunt syndrome (Shingles of the ear).

If treated with Shingles strength antivirals and corticosteroids within the ideal window of 72 hours from onset of the vesicles, the prognosis for complete recovery is greatly improved. For those of us misdiagnosed, cranial nerve damage can be extensive.

And, this misdiagnosising is still occurring now. When patients have to contact the diagnosing doc and request proper medical treatment in this computer age is appalling. Perhaps these “specialists” need to start thinking zebras and not just horses when they hear hoof beats.

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