There are real-life bad consequences to mis-diagnosing ‘stress’.
When I was 22 years old I was finally diagnosed with MG after two years of doctors telling me I was stressed. I had experienced trouble swallowing, double vision, weakness, and shortness of breath - but nothing seemed to happen at the same time, and my symptoms never seemed to impress anyone. After the third incident of choking on my food - to the point of turning blue one evening - my then-boyfriend took me to the ER. Two hours after I arrived I was seen by the doctor who told me he thought I was very ill and needed to be hospitalized. I thought, “Wow! Finally!”. When the admitting clerk came around for my signature for “Permissiom to Treat” I discovered I was to be admitted to the psychiatric ward, and so I left Against Medical Advice. I vowed not to ever seek treatment for my symptoms again.
Two years later I came down with a horrible cold-turned-bronchitis and every symptom I ever had flourished to the point that I had no choice but to seek emergency care. In the ER I apparently stopped breathing and woke up on a respirator to a neurologist telling me I had Myasthenia Gravis. I came to learn that I had MG for at least three years before that.
I wish doctors would realize the serious implications of jumping to “Stress” as a diagnosis without considering anything else. I almost died and it didn’t have to be that way at all.
52
45 years ago, my mother-in-law, who was 49 at the time, went to see her doctor because she was feeling unwell. Fatigue. Weight gain. Indigestion. Stress he said. Menopause he said, and sent her home. She died 3 days later from heart failure.
10 years ago, I had occasionally experienced sudden fatigue so extreme that I had to put my head down, and sometimes fell immediately to sleep. Lots of tests. Nothing. Stress, multiple doctors said. See a shrink. Until one suggested that I was probably have an interaction between two medications I was taking, causing interruptions in sleep that I was unaware of, leading to sudden bouts of extreme fatigue. I stopped one of the medications and the symptoms disappeared within a week.
It's easy to dismiss symptoms as stress. It is harder to look more deeply and trust the patient.
32
@Kathleen
Surely sexism plays a role in this, too, with women's symptoms too often easily dismissed as "stress."
39
This is an aside, but . . . North York General Hospital is in downtown Toronto?! I had to chuckle when I read that.
2
@Norm Nopper Why?
I really gotta stop reading these. They are so depressing. Most of the doctors saying gee don't know and shrugging, the others not trusting the ones who went before so running the same tests because I and I alone know how to read them, once they know about therapy assuming the patient is crazy or attention seeking or a hypochondriac. And I bet a lot of her charts say that. Especially if you are female. Doctors don't like to show they don't know something and they don't like to show they are wrong. And the patient will suffer as a result. This is like every experience of a patient who has something not diagnosed (correctly) in 30 seconds. Anyone who has had a serious health problem recognizes all of these as the same thing. And maybe when they run these they should show the medical costs of the repeated tests, useless pointless tests, appointments with useless arrogant doctors, visits to ER, cost of missed work, etc. These are all the same.
18
This column has much in common with my personal story 30 years ago. After developing generalized weakness and diplopia, I was evaluated by several neurologists and internists in the Washington area. After their evaluations and a MRI, there was no diagnosis. I was advised to see a psychiatrist for possible post partum depression.
As a physical therapist I tried to exercise early in the day and keep my strength up. I adapted but would describe the feeling of "hitting the wall" or like I was running out of gas by the afternoon. Three years later, I decided to try again and went to Hopkins. After forty five minutes , there was a clinical diagnosis and later tests that confirmed the diagnosis of MG.
It is difficult and stressful to continue to seek care for symptoms that remain unnamed. I am grateful to columns like this one that describe persistent efforts to find and receive proper diagnoses and care.
31
About diagnoses, we have an old expression for it. See a surgeon, she’ll tell you that you need an operation. See a psychotherapist, he’ll tell you you’re depressed. See an oncologist, she’ll find symptoms of cancer. See a gastroenterologist, he’ll want to do an endoscopy.
The expression is, a man who has only a hammer sees everything as a nail.
24
I saw an Optometrist a while ago--my regular doctor. I asked him about some twitching I was experiencing in my right eye. He took a look at the eye during the exam, and declared the twitch was from emotional stress. While we had no discussion of any difficult aspects of my life, he was sure there was no physical cause for the twitch. I immediately discounted this leap to a psychological cause, because it is the easy answer when "I am not sure" would have been the honest one. And yes..I am a post-menopausal woman.
I found that paying more attention to my position at the computer and being certain to wear my glasses during those times has pretty much eliminated the twitch. So no--it was not related to the kind of stress he assumed it was. Just another example of a leap to the wrong conclusion.
21
What can be helpful about a thorough psychiatric assessment may be an ability to provide a comparison of the patient's symptoms with more common presentations of typical mental health disorders. That can be helpful in trying to advocate for further medical workup in atypical cases.
If the situation is such where the psychiatrist can work with the patient for more face-time and longer-duration-- the psychiatric can also give a better sense of usual symptoms/coping vs. something aberrant for that person.
Cutting down visit duration and face time due to the electronic medical record-- can only hinder a primary care MD's ability to leverage similar capacities for themselves. Would advocate for any system changes that would allow a primary care doc to have time to think and get to know their patients...
8
My wife grew up in Canada. Several years ago a friend of her mother in Toronto was awaiting an appointment for an MRI because as the article reflects there are very few scanners in Canada. Her mother wanted to know if anyone knew how to speed up the appointment process as her friend was very nervous.
I suggested she go to Buffalo or Niagara and pay for the test. Twenty four hours later an MRI had been performed and her physicians in Toronto had the scan and report in hand.
It turns out there is a virtual cottage industry of MRI facilities along the border. Yes it’s not free, but because of the competition it’s quite affordable.
19
Here's some context for the problem described by Dr. Sanders:
1) Our Westernized culture has created a mythical divide between "medical" problems and "mental health" problems, i.e., medical and mental health problems may co-exist but are distinct and need to be treated separately.
Yet, that's not how our bodies work. Our physical selves, our emotional selves, and our cognitive selves are not distinct; being human means living in bodies in which all these dimensions of self are interconnected and intertwined.
2) This dichotomization also is exacerbated by an unfortunate unshakable belief in medical tests to determine what is "real." Few doctors and therapists take the opposite perspective, i.e., most people know how they feel and they know when something is wrong or off in their bodies. Yet - as evidenced by so many responses to this column - patients are often told that that what they are experiencing isn't "real" because the test said so.
3) Increasingly, doctors have X number of minutes to spend with a patient. This makes it almost impossible to be truly present and focused in assessing and understanding what a patient is experiencing.
In the story presented here, had doctors not assumed a dichotomy between "medical health" and "mental health" and had they not assumed that her problems weren't "real" when tests didn't show particular problems, and had they been listening - really listening -to her from the get-go, then this story would have ended much, much earlier.
18
@Beth: thanks for a beautiful description of some of the major issues with our health care system. in addition, I think women are much more often given the "It's emotional" diagnosis.
23
Myasthenia gravis is always a tricky diagnosis. I can tell a story that makes the same point much more clearly. I went to the ER with severe pain on the right lower chest/upper abdomen with breathing. The doctor wrote this down as "chest pain" and worked me up for every possible disease of the heart and lungs. When tests showed I did not have a heart attack or pulmonary embolus, he told me that I was just being anxious. He had seen the medication for depression on my med list, so he knew I must be a hysterical woman.
It is true that I was anxious. It hurt a lot. But anxiety was not the cause of my pain.
I asked to see my lab. Note that the doctor in question knew that I was a doctor myself. I looked over the results and asked "Why is anxiety making my white count high?" It was 16,000. The usual cut off is less than 10,000. He thought about if for a minute and said "You must have bronchitis". I was not coughing. Note that he never checked my belly. If he had, he might have noticed that I had something called a positive Murphy's sign----tenderness in the right upper abdomen when I took a breath due to the diaphragm pushing down on my infected gallbladder. By the time I figured out on my own what was wrong and went back to the ER, the surgeon told me it was "the worst gallbladder" he had ever seen.
Just because a patient is anxious about their symptoms, that does not make their disease anxiety--unless the patient is a woman being treated for depression.
78
Although the patient had to wait for an MRI, in the states we sometimes endure years of testing before receiving a diagnosis of Myasthenia Gravis - it is not uncommon. I had gone two years and received two misdiagnoses. Kudo's to the patient's psychiatrist's awareness & guidance.
17
In my late thirties I was seeing a therapist and I told her my heart was beating super fast from time to time. We worked for a year on "what was this doing for me" and I assumed she was right that I was experiencing panic attacks that were keeping me from living my life fully, going outside at times with agoraphobia, and more. But it turns out my doctor had done all the usual tests but one: thyroid. And after that another doctor listened to my heart and told me I had a heart mermur, and a cardiologist did a blood test which disclosed hyperthyroid and an endochrinologist did tests that showed I had graves disease. After two radiation treatments, I don't have panic attacks, my heart beats normally, and I have learned not to trust therapists when it comes to physical symptoms becomes sometimes they don't know what they are talking about. And I lived that way for a few years.
33
A family member was "diagnosed" with myasthenia gravis, which actually turned out to be Lyme disease, easily treated with antibiotics. It's important to consider Lyme in any case of Bell's palsy.
11
Why is it that when a woman becomes sick and there is not a 2-second diagnosis, she is automatically diagnosed as being mentally unbalanced? We have not gotten beyond the diagnosis of "hysteria" as an assumed condition for any female.
73
I think she needs a new primary care physician. The advice to go for psychiatric care for stress, when it was her psychiatrist who referred her because it was obviously not stress related - well to me that is such egregiously bad advice I would not trust that primary care Dr. anymore.
35
Long wait for an MRI? Yeah, that single payer healthcare system in Canada is the envy of the world. Here in the US it would be a wait of a few hours at most though it would not be “free.”
6
Article is entirely misleading. Healthcare varies greatly by province for starters. Second, people are prioritized. More pressing cases always go first. Third, at least in our province you can easily buy a private MRI test if you wanted it.
We have some of the very best cancer survival rates in the world, surpassing the US, lower infant mortality and greater longevity than the US.
One of my kids has an encompassing disorder and we’ve had nothing but excellent and fast care into very many specialists. Easily as good as what we received with private health insurance in NYC.
My elderly parent gets house calls by her psychiatrist. And we adults have had various medical procedures in hospital. We can go to any doctor, any specialist, any hospital. And we’ve never seen a bill, needed to worry about health insurance nor faced what our family have faced in the US: stuck in a horrendous job because of fear of losing health insurance.
Ya no thanks.
43
@Thomas Smith: Miss this sentence Mr. Smith?:
"There are fewer than 350 of the machines in the entire country — a fraction of the number in the United States."
There are 37 MRI machines per one million people in the U.S. Canada has 9.5 machines per one million people. It isn't the single-payer healthcare system that's the problem.
You're right about one thing: an MRI will cost you dearly in the U.S.
8
For some a wait of a few hours. For those who can’t afford any health care it wouldn’t matter, they would be left to suffer.
15
Somewhere the shade of Berton Roueché, master chronicler of medical mysteries for The New Yorker for fifty years or so, and whose books therein are worth the online seeking, is smiling.
13
Yes! As I read this case, I thought about "footprints of a zebra"... I gave my orthopedist Dad 2 of those books as gifts years ago - fascinating reading, even for non-medical field laypeople like me.
5
Oops - the term Dr. Roueché coined was "HOOFBEATS of a zebra" (I had to look it up) ... and the article in which he used it (or at least the one in which I first read it/learned of it) was about a case of myasthenia gravias, as it happens! The term definitely applies in this instance, and based on my own experiences and those of many commenters here, it's applicable quite often in modern medicine.
https://www.newyorker.com/magazine/1984/06/04/the-hoofbeats-of-a-zebra/
4
My father, a nephrologist, once told me that the best clinician he ever knew happened to be a psychiatrist. They pull from their knowledge of disparate medical systems and synthesize. Guess what medical specialty I practice now? I don't understand why so many physicians in other specialities, when faced with the unremarkable results of the first or second test they ordered, shrug and say it must be a mental health issue. Get curious and creative, please.
29
Doctors and the knowledge base they carry in their heads can be an amazing group. I know an ophthalmologist that, whilst during the course of a normal eye examination, diagnosed West Nile - out of the blue. Maybe it's an easy thing to do but the patient presented no other symptoms until the blood work. Amazing - at least to me it is.
God bless our good doctors.
19
The fact that the psychiatrist recognizes the symptoms are not mental health related and pushes for further diagnostic testing (even suggesting the correct diagnosis), is likely based in the assumption common among psychiatrists that physical symptoms are medical until proven otherwise. General practitioners need to be better educated on what does and what doesn’t constitute a psychiatric symptom.
38
On the other hand, psychiatrists seem to work from the perspective that psychiatric symptoms do not have discernable and treatable physiological bases. Therefore, they treat the (behavioral) symptoms as phenomena that stand apart from the bodily systems that give rise to them. In fact, if and when the physiological underpinnings of psychiatric symptoms are identified, psychiatrists declare that the very same symptoms that they use to form diagnoses are no longer psychiatric in nature. See, for example, the story of anti-NMDA receptor encephalitis told in the book, "Brain on Fire: My Month of Madness." The same thing happened to my partner's rapid cycling bipolar mania diagnosis once we pieced together the lab results of several doctors (because no one of them could follow the case to its own conclusion), sought the treatments indicated by the results -- many of which were of our own design based copious publicly available medical and allied scientific research and brought the symptoms to a halt that has lasted more than a year and counting. Only then did a psychiatrist conclude that complex genetics and a long term Lyme Disease infection involving the central and peripheral nervous systems explained the antecedents of the psychiatric symptoms (and the physical symptoms that the psychiatrists largely ignored), at which point he concluded that there was never a true psychiatric disorder. As if infection, inflammation, and genetics are unrelated to psychiatric symptoms. Crazy!
7
I think this woman is lucky to be Canadian. If she was sick in this system, I'd envision either of these two outcomes: 1) she would have needed to pay out of pocket expenses for tests and seeing different specialists and she'd probably been in debt now up the yin yang, or 2) she'd still be undiagnosed and trying to cope on her own with the large magnifying glasses and cutting down her work from full to part-time. Either scenario is terrible and she would be either pauperized or remain in poor health. This scenario, is quite accurate.
61
If she had insurance, as most (admittedly not all) of us do, she be out of pocket for a hundred bucks or so and would have gotten exactly the care she described. Let's not allow our politics regarding medical insurance distort our judgment.
1
@sues I thought the exact opposite about the Canadian health system when I read how long it took for her to get an MRI.
1
I totally agree! As a Canadian living in the US, there is simply no comparison with the Canadian health system and our poor American friends and their struggles to just deciphering (let alone paying for) what exactly is offered by their insurance policy. Shame on the Texas judge for politically deciding against Obamacare, the last line of defense for millions against barbaric medical bankruptcy, Trump and his cold hearted enablers in Congress. Vote, folks. It matters.
20
I always read this articles with interest. Who doesn’t love a mystery solved. However, my ultimate takeaway is that the majority of doctors are dumber than a door. What gives with medical training?
22
@Martha Campbell Not as dumb as people who comment without knowing what they are talking about. But Sanders story is indeed a good medical mystery, something I can relate to since my neuro-opthamologist has been testing me for MG. She underscores how difficult this diagnosis can be. Her training and her insight are impressive indeed.
3
We need to remember that “in your head” does not mean something is not physical. It means this involves the brain, neurons, chemicals- all very real body parts.
I would love to see this phrase go away, especially with mental illness. There is not a magical cloud driving your behavior, it is your brain.
It turned out to be something different, but “in your head” is just a lazy way for a physician to handle a disorder he or she does not know how to tackle.
And it is quite often used as an excuse to not look further-especially in female patients.
60
A recurring theme in the Times's diagnoses articles is numerous doctors chalking up their own ignorance to patient psych problems. This is an especially serious problem in medical treatment since the doctors these patients seek for second, third, etc. opinions frequently repeat the false, ignorant diagnosis.
It seems a cultural failing that it's so hard for adults to admit not knowing the answer (and then trying to find it). And as a cultural problem, this afflicts most industries, not just medicine.
35
I have MG, revealed by the antibodies that showed up in my blood test and my symptoms. Double vision was my original symptom.
When I saw my eye doctor, he found nothing, but was experienced enough to send me to an ophtho-neurologist, who noticed a shifting pattern in my eyes and sent me for my blood test, which revealed Myasthenia Gravis via the presence of antibodies.
What I don't understand is why this article ends where it does. My speech, chewing, swallowing and neck tone were all significantly affected. After several months on Mestinon which all but stopped working, I was put on Prednisone and Cellcept. After a few months, my symptoms were all but gone. I am presently being weaned off Prednisone and, so far, my symptoms have not returned. This woman needs to see a doctor more familiar with the treatment of Myasthenia Gravis!
23
in 2015, I had a minor stroke and had to be on statin and HBP medication for the first time in my 60 years of life. I never knew before that statin would raise my liver enzyme so I asked my then doctor the reason for it. The answer, which could have been--Let's do some more test"---was "maybe you have Hep B"
I asked further " what! and why Hep B" The words out of my physician was " Well, you are from Thailand, aren't you? They have a lot of Hep B there"
No longer my physician
21
Nothing your old physician said was inaccurate.
4
My partner had all of these symptoms and more -- including symptoms consistent with a major psychiatric disorder. The psychiatric symptoms and (mis)diagnosis made getting to the roots of the medical problems much more difficult, but I persevered in researching and helping her experiment with various supplements and remedies, one by one, as we narrowed down what could be behind her fatigue, pain, muscle weakness, vision, neuropathy, Bell's palsy, tachycardia, speech, gate, cognitive, mood, and psychosis problems, which varied over time and worsened during times of psychological stress.
At long last, enough dots lined up to suspect neuroborreliosis: neuro-Lyme Disease. A Western Blot test and other tests confirmed our hunch. Lyme, "the great imitator," was showing signs of MS, chronic fatigue, mitochondrial disfunction, hypothyroidism, bipolar disorder, and many other serious diseases. We estimate that she had an undiagnosed infection for about 25 years before her health and life seriously unraveled. Bell's palsy is a classic Lyme symptom, but none of the doctors ever suspected Lyme, we had to hunt for a doctor willing to test for it during a major flare up when it would be detectable.
After addressing a major inflammatory cytokine imbalance due to Lyme, supplementing with exogenous thyroid and nutritional products to address measured deficits, and implementing stress management techniques to quell immune system activation, her problems almost entirely resolved in 3 months.
32
When I was 24 I was told that the lump in my neck and exhaustion I was experiencing was stress related. It was Hodgkins' Lymphoma.
45
Years ago, our next-door neighbor and friend of my mother's became exhausted and unwell. When my parents discussed this, I remember my mother saying that she shouldn't have told her doctor about her many marital problems. Sure enough, her symptoms were attributed to 'emotions' until her liver cancer reached an advanced stage.
One can only hope that the increase in the number of female doctors will stop this problem.
60
@KJ:
You're assuming there is something inherent in being a woman that would allow them to "see reality" where male doctors become confused by culture?
As a now retired RN and a woman, who worked over 30 years with male and female doctors; with Black, white, asian, etc doctors, it seems to me entirely individual.
People don't usually conform to easy-answer "handles" that explain or guide their behavior.
12
@RLiss
I don't think its about seeing reality or being confused by culture, but I think it can involve bias. And bias can interfere with an accurate diagnosis as any good clinician knows.
9
I think it's disrespectful to refer to the patient as "the middle-aged woman."
6
It would be more useful if the often-observed bias against older women had been included as context.
10
@Laura:
why "disrespectful" if that is what describes her best?
Short of a several paragraph long segue into her biography .....
6
I’m curious why she wasn’t sent to a neuro-eye doctor.
It’s interesting and discouraging that mental health problems impede access to proper diagnoses. If someone with a casted broken leg came to a doctor with blurred vision, would he say, it must be your broken leg?
17
Stress...every issue the doctors say stress...not from life so it must be stress from doctors' inability to diagnose?
32
Sick while being female almost guarantees a diagnosis of stress when a doctor is too unmotivated (lazy) to look beyond the obvious.
71
Doctors told my husband that the pain in his side was from “stress”. Finally, a female M.D. took the time to really consider his complaint and she discovered the sponge that had been left behind after his appendectomy. Stress, etc. is the fall back diagnosis for “I don’t know and I don’t care to be bothered.”
86
Interesting story written by Dr. Sanders.
On the down side it will send many hypos reading this story to the doctor's office with countless needless visits, expensive procedures, tests etc. claiming they have the ailment.
3
@Paul--You seem a bit obsessed with "hypo" behavior--especially as it relates to women. Why does this bother you so much? How does it affect YOUR life?
If you were a woman, you'd understand completely that females are notoriously misdiagnosed more often with "mental" conditions when, in fact, they are suffering from a true physical illness unrelated to "mental problems." It happens much more than people may think.
I don't see a "downside" to making absolutely sure a (serious) medical problem has not been misdiagnosed. Someone's life could literally be in danger if, for example, a brain tumor is misdiagnosed as "anxiety and/or depression." And that's just one possible scenario.
11
@Norton-Thank you for your reply. To me and millions of other people who are insured it comes down to money.
The four biggest rip offs of our medical system re money that involves trillions of dollars are:
1-Billionaire HMO and big Phrama execs. who put their greed over patients health.
2-The opposite of the hypo, the person, usually the man who never goes to a doctor and then becomes very sick and racks up a big bill.
3-The hypo, usually the woman, who goes to a doctor every day for non existent problems. (see senfeld episode with Elaine)
4-The outright crook who steals using fake info etc.
We have the most expensive health care re our peer countries, anywheres from 1/3 to 2/3 more resulting in the loss of trillions of dollars and also some of the worst stats like life expectancy, infant health rates etc. etc.
4
Honestly, I don't know anyone who fits your description. Those people who have health insurance are usually employed fulltime, and not willing to risk taking time off work to see a doctor. Those of us who are on public assistance healthcare (and I should say most of us are employed as well), don't like going because then well everybody knows that we're on Medicaid and trust me you aren't treated the same.
8
As a Canadian, I was quite pleased at seeing her easy access to many doctors, and the numerous complicated tests she took. She never saw a bill, or found out the costs of her treatment. Yes the MRI could have been faster, but no one in Canada gets bankrupted because they are sick; or dies because they didn't have access to a doctor.
85
And, in Canada, if the patient’s symptoms worsened or her physician felt the need for the MRI was urgent, a phone call to the radiologist would expedite the test.
29
@Fred - Actually, sometimes they DO die. Because my Canadian father had to wait two years for an MRI, his brain cancer was too far advanced to be cured. While I think it’s fantastic that Canada (and most other civilized nations) have socialized medicine, we should recognize that this type of system does have some serious flaws that need to be addressed.
3
@Fred
Maybe. I was struck by this article:
https://www.dailymail.co.uk/news/article-6485619/Number-patients-NHS-waiting-lists-hit-FOUR-MILLION-time-decade.html
I think you can also die by being on a waiting list, true?
This article caught my attentions because of its mention of diplopia, which was more severe, or at least noticeable after After becoming the proud recipient of a TBI in the backseat in an auto accident in ‘74… Nowadays, It’s more of a background annoyance with My near object eyesightsight diminishing with old age as it usually does. What’s bothering me most now though is my left eyeball which has undergone a cataract surgery that failed (even the doctor didn’t notice that original lens had become detached from all the fine muscles that focus it): so now I have had a ‘hard’ lens installed, but the(left) vision is slow to improve because - yes I know, I should’ve worn my eye googles when using the angle grinder on that steel piece… There was an iron object lodged in my left eyeball. But hey, I was in a hurry, and because colds, wasp stings, and poison oak don’t bother me anymore, I thought I was invincible! And by the way, I had always told doctors that I had a “parallax problem“ with my eyes… And talk about lofty doctors playing God, none of them ever corrected me that I in fact had a affliction known as diplopia, go figure. Fortunately medicine has a slow and pragmatic learning curve, and who could account for my multiphasic injuries - afflictions.
3
I realized many years ago that the patient (me) provides his / her own diagnoses by choosing what type of specialist to see.
14
I wonder if this diagnosis could be relevant to the case of Ann in a November column. Although the Nov. article noted MG was ruled out, details were not provided. There are definitely similarities in the stories.
1
I certainly feel a more than healthy skepticism for medical diagnosis. My 87 year old father was in the hospital for a week due to an infection they couldn't figure out but finally did. At that point however, he appeared depressed so was sent to the psychiatric ward where they tried an array of meds on him but nothing could budge him out of immobility for 6 weeks. How depressed was he? Enough that ECT was recommended and we 3 children concurred. When the anaesthesiologist was about to put him under he stopped the procedure because my father had severe anemia! They gave him blood transfusions instead and his "depression" lifted. Problem is that after 7 weeks in bed or a chair he was severely debilitated and this marked a downward trajectory in his quality of life.
38
So nobody checked his hemoglobin, at all, until weeks down the track? Nobody ran one of the most basic, frequently ordered tests in all of medicine? Really?
11
Once a patient is handed over to the psychiatrists, everything seems to revolve around psych meds, psych meds to counteract the side effects of the first psych meds, and maybe some non-psych meds to protect against the metabolic and organ damage due to psych meds. Most of the medical model seems to be lost on psychiatrists. Unless a patient advocate is pointing out evidence of underlying medical problems, a patient with a psychiatric diagnosis may get little or no conventional medical attention. All symptoms are attributed to a malfunctioning brain and inexplicable bodily and perceptual dysfunctions that are presumabed to be a consequence of being brain damaged. Ironically, even a detailed investigation of brain damage, which is real and present during psychiatric symptoms (often due to chronic activation of the brain's immune system), is ignored in favor prescribing whatever psych meds the drug sales people are pushing when one becomes a psychiatric patient. Note that my perspective is informed by two years of helping my partner navigate such a situation after being labeled as a psychiatric patient due to symptoms caused by underlying, measurable medical conditions. You can read a little more about that in my comment, above.
9
@PeteH I have not doubt that he was not tested because of his age- why bother when the patient is so old that he might not live long enough to pay the bill?
4
She probably has a stroke. Or possibly a small tumor.
But because “it takes a few months to get an MRI” in Canada as this article correctly notes due to a single payer healthcare system, her diagnosis and treatment will be delayed - by months. Putting her at risk for recurrence and worsening fornthe length of time the diagnosis is delayed.
Still want universal, government run healthcare?
4
I want the system WE have, where insurance company doctor hacks decide what is covered, and where I can't afford to see multiple doctors to find one willing to put in effort to make a diagnosis.
48
I lived all my life in Canada until I moved to the States five years ago. In Canada, I never went without needed healthcare, and paid nothing. Here, I have to choose whether I seek treatment based on my wallet. It’s absolutely absurd.
69
@AVR
The system is very good, buy governments need to put more money into it, as in purchasing more MRIs.
12
Always keep an ice pack in the eye clinic freezer. It is a rapid and non-invasive test for MG.
8
And what is the test?
6
One possibility of what was going ont with the M.G. patient is that only part of the nerves coordinating eye function were affected.
Most muscles are composed of both slow-twitch fibers and fast-twitch fibers; they are innervated by different nerves. If the injury to the patient's facial nerve, 20 years earlier, affected only one of the two types of nerves, then the patient could experience an alteration of the eye-coordination function. In particular, as we get older the aging process affects muscles selectively, and we lose more fast-twitch fibers in proportion to the other kind. Because slow-twitch muscle fibers are more postural (i.e. developing a small force for long time, and holding a steady position), if they had been affected, the postural function would be compromised. Fast-twitch muscle fibers instead are for developing great force for short times, and are not good to maintain a posture. I know that neurologists miss how this distinction could compromise a function. The double image could be caused by the eye position not maintained exactly where it's supposed to be pointing.
9
The straight arm test strikes me as weird. As the patient is having a vision complaint the test is usually performed with the doctor raising his/her arm way up (not the patient) and having the patient look way up to view the tip of the index finger. I always tell patients their eyes should be stronger then my arm. In Myasthenia Gravis frequently as my arm tires their eyelid begins to droop and their double-vision worsens. I then follow it up with a rest test (closed eyes for 5-10 min) which should show recovery.
7
I work in the healthcare field and one thing I have noted - symptoms in women, especially middle aged women, seem to be more quickly attributed to emotional/psychiatric disorders or to menopause. I had a patient who reported hot flashes, irritability, sweating and jitteriness. He PCP -without any labs- diagnosed her as menopausal with anxiety and put her on Prozac. She returned with worsening symptoms, and again, with no labs, he increased the dose of Prozac, Amazingly, when she returned with one eye started to bulge, he STILL attributed it to anxiety. When she insisted on getting labs done, as she had done some Google research (this time was actually helpful!), she was found to be floridly hyperthyroid. I wonder if a male patient presented with the exact same symptoms would have been treated the same.
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@DJ: I've worked as a medical writer for 32 years and I have similar stories to tell. One young woman who had symptoms of myasthenia gravis not only was told it was "all in her head;" she was admitted to a mental hospital for several weeks. She ended up finally being diagnosed by a pediatrician to whom she had taken her baby for a routine visit. This happened in New York City.
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@DJ
To the best of my knowledge there are no objective medical test or diagnostic criteria for eliminating psychosomatic causes. The only method that exists is to find a direct physical link to the illness. Otherwise when the medical doctor gives up the symptoms are merely relegated to a vast, catch-all, psychosomatic diagnosis.
I think it interesting to note that many everyday phenomenon are psychosomatic too. That is to say, an unconscious state-of-mind results in a physical effect. Examples include: tears, goosebumps, salivation and the placebo effect.
Some psychosomatic effects are hallucinations, but that does not mean that the person is nuts, either. A good example is the phantom limb phenomenon experienced by most amputees. Many dentists will tell you that there is a similar phenomenon when a tooth is extracted. There is a neurological cause for these, but no objective test exists for them either (other than the obvious fact that an arm, leg or tooth is missing).
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@DJ Absolutely spot on. I still remember a colleague (20 years ago) whose wife was having terrible headaches. All put down by her doctor to 'her time of life'. Until she had the stroke which left her completely paralysed. His anxiety and grief, as he came to work from the hospital and then returned afterwards to be with her in the evening are something I shall never forget.
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This is basic Internal medicine/neurology diagnostics which we seem to have forgotten once existed in this country. A doctor with enough time to actually talk to and examine a patient and with the requisite Diagnostic skills ( which aren't on a cellphone app) would have suspected this DX on the first visit with confirmation by neuro. An MRI/CT are necessary to rule out retrorbital or chiasmal lesion and to discrimnate between MS & MG. No mention of a tensilon test, which would have been diagnostic. I am not in Canada but I think acute diplopia would be a high enough priority to move up the MRI list.
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"... he ordered an M.R.I. It would take a few months, he warned her.In Canada, getting an M.R.I. takes time. There are fewer than 350 of the machines in the entire country — a fraction of the number in the United States." This certainly makes one think twice about Canada's "free" health care. "Free" always comes with a cost.
15
sigh, was waiting for folks to jump on a misinformed and irrelevant side topic. My family in Canada has never waited 3 months for an MRI regardless of the chief complaint. I Absolutely love Dr. Sanders’ work, I buy her book for friends and found this case, as usual, interesting and informative. But she should have known better than to use a stereotype as a narrative device.
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@Janet And my elderly mother in Tucson, AZ (home to a lot of older folks and a huge university medical center), retired from that same university medical center and with full health insurance, had to wait four months for an MRI. And then three more months for an appointment with a neurologist. My waits in the Chicago area for a routine checkup with my rheumatologist run at least three months. No bragging rights here, I'd say.
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And how many people in the US wait forever for an MRI because they simply can’t afford it (or the deductible), or because their insurance won’t authorize it?
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Dr. Sanders' case histories are fascinating, but one thing keeps bugging me. She often describes long series of experiments and blind alleys without explaining who is paying for this. Medical visits alone can be expensive. Tests, more so. In this case "She saw two more eye doctors over the next week. No one had an answer." Health insurance companies balk at multiple visits, and the Republicans have declared war on government health care.
Dr. Sanders is in a position to know about cases where long-drawn-out medical treatment is necessary but difficult to explain to a bean counter. I wish she'd write on the subject.
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@Charlesbalpha
She is referring to a Canadian patient. We see as many Doctors as we wish as often as we need and don't pay a dime.
And we don't wait forever for an MRI. If you have a serious illness, you can usually get an MRI within a day or two. If you have an illness, yet to be diagnosed and the MRI is a fishing expedition, you may have to wait longer. The MRI, like the Doctors, are paid in full by our healthcare system.
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@Abruptly Biff
Yes, I missed the Canadian reference and I understand that the Canadian system is more rational. But many of Dr. Sanders' articles cover American cases and she doesn't discuss medical costs in those articles either. It's just "the doctor ordered this test and then she ordered that test".
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Fortunately for this patient she lives in Canada where multiple doctor visits where not denied by a insurance company trying to save profits for their investors. Medical care as a money making machine is nothing but obscene.
I know a doctor that won't take Medicare because he has a gold digger that likes expensive things to support.
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My eyes have been out of sync all my life. My brain has learned to accept one image and ignore the other. There are unpleasant side effects. The lesser-used eye seems to be growing weaker. Also I have no depth perception, which depends on the eyes focusing together.
I'm curious why, if her eyes weren't in sync, she didn't wear an eyepatch. It wouldn't heal the problem, but it would enable her to read because she wouldn't be getting conflicting images.
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@Charlesbalpha I have the same condition as you from birth. But if it happens suddenly in adulthood then it can indicate a serious problem that is worth looking for.
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@Me
I understood that. I was suggesting using the eyepatch as a stopgap while looking for the cause of the problem.
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@Charlesbalpha: that is amblyopia. It is a serious eye condition, usually diagnosed by childhood.
Most sufferers have the weaker eye "turn in" -- a crossed eye.
With enough disuse….the weaker eye will eventually become blind, or nearly so.
Your BRAIN -- where all vision really is processed -- learns to adapt to such vision problems, and makes up for it to some degree.
BTW: I have amblyopia, diagnosed when I was only 11 months old. I wore bifocals as well as an eyepatch for TEN YEARS (in the 60s) until I had corrective eye surgery.
The surgery is only cosmetic; it cannot replace true binocular vision or depth vision. I've also had Lasik in both eyes, which corrected my weaker eye to the point it is far more functional than ever before….but not enough to be able to read. (I have 20/20 vision in my good eye.)
Presbyopia in middle age makes all of this much, much worse.
Charles, please go see a ophthalmologic special ASAP! I don't know if any your vision can be saved or recovered, but your description is very troubling. You should also be screened for other vision and brain issues.
1
I'm a pulmonologist and was referred a 30's year old female patient who complained of shortness of breath with effort. I believed her(others did not)
and began a series of tests to determine the cause. I found no abnormalities until I took her for a brisk walk while she wore an oximeter, a device that measure peripheral oxygen saturation in the blood. For a young patient this reading should be 100% saturation regardless of effort or sensation of shortness of breath. But for this patient the O2 saturation dropped dramatically as she became very short of breath. I knew her lungs were functioning normally in all respects had measured the arterial oxygen level also as part of the initial evaluation. It was normal even with effort! So I-had a situation where the blood contained lots of oxygen leaving the heart but very little after passing through the periphery. To me this suggested a muscular problem with oxygen usage and that the muscles striped off too much oxygen.
Fortunately she had good insurance and I was able to refer her to the Mayo Clinic. There they confirmed my findings but did not find McArdle's Dsease.
I still felt there was something wrong with her muscle function and referred her to a local neurologist who listened and examined carefully then made the diagnosis of Myasthenia Gravis. With treatment for this she improved greatly and was able to live a reasonably normal life. She did require some supplemental oxygen to be more comfortable with effort.
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Hooray for hanging in with her though this!
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This patient reinforces my belief that every patient and physician should read Dr. Jerome Groopman's book How Doctors Think. He explores epistemology and the natural human tendencies that lead to missed diagnoses. While not perfect in itself, the question for your physician "what else could it be" may prove lifesaving.
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@David
Yes. Physicians need to be reminded about differential diagnosis.
3
Yep. Same experience here, several times over.
Worst one was when a neurologist told my husband he "might" have ALS (Lou Gehrig's disease), did absolutely no testing for and made no attempts to suggest or investigate other possible causes, and told him to come back in 6 months.
It was only when I insisted on a follow up appointment 3 weeks later (where I could also be present), and suggested that my husband's history of severe allergies could point to an autoimmune problem did the neurologist do basic blood testing for autoimmune antibodies. And guess what! That was the ultimate diagnosis. To make matters worse, the neurologist refused to accept the blood work findings. We ended up going to Mayo Clinic for a second opinion, where they confirmed the diagnosis of an autoimmune problem.
Woe to the person who can't educate themselves on their medical issues, and then effectively advocate for themselves or their loved ones with the medical community. It shouldn't have to be that way.
11
I am not sure what made this so complicated. Binocular double vision, that develops rapidly, implies a nerve problem. The type of diplopia - how the image doubles - can identify which nerve is suspect. Rule out the tumor, or some other physiology that impinges on the nerve, and you have a ticket to see the neurologist. Perhaps it was so episodic that it didn't occur at any of the ophthalmology visits so that the doctor could test the condition first hand.
Even our single physician practice has seen MG patients, and sent people with diplopia for further testing and evaluation.
The key to a physical complaint is to rule out all physical possibilities before assuming it is just stress. MG is not so rare that no one thinks of it; for heaven's sake even ophthalmology technicians are supposed to know the main symptoms. The disease is highlighted as an autoimmune disease with ophthalmic symptoms in the first 100 pages of the AAO textbook.
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Part of the problem is that there is a lack of understanding among most neurologists and neuro-ophthalmologists that Lyme Disease and its common co-infections can cause symptoms consistent with ocular Myasthenia Gravis and other nervous system disorders. Thus, if they rule out a tumor or other observable impingement upon the nerve, they may be tempted to treat what is actually neuroborreliosis as Myasthenia Gravis, which may, in turn, make matters worse. The fact is, most medical professionals are quite ignorant of the many ways that untreated Lyme Disease -- the most common vector borne disease in America -- impacts multiple physiological systems and associated symptoms, so they may never guess that they have an infected patient in their care. My partner was one of those patients. So was nurse practitioner Cindy Kennedy, who described how such a misdiagnosis of MG and improper treatment worsened her health on her year-old "Living with Lyme" podcast show.
One of the few major universities to even hint at the connection between Lyme Disease and neurogical symptoms (such as Bell's palsy and Myasthenia Gravis) is Columbia University, which touches on the subject in its Lyme FAQ:
https://www.columbia-lyme.org/faq
3
MRIs in Canada don't take long if its urgent - I had one within 24 hrs of developing neurological issues, 10 years ago.
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My very active and energetic sister developed MG just before turning 80 years old. She seemed unusually tired and her eyes drooped so bad that eventually she wound up taking a nasty fall which landed her in the hospital. Her speech became noticeably slurred and breathing became difficult enough that she was put into a medically induced coma for intubation. A neurologist tested her by giving her steroids (don't remember if it was before or after the coma) and everything was temporarily normal again. He was then sure it was MG and put her on medications which she took for the rest of her otherwise normal, happy life.
35
The last paragraph suggests that the psychiatrist suggested stress as the cause. It was the neurologist. It is important to treat all medical specialties equally.
6
30 years ago, after the birth of my 3rd child, I had postpartum thyroiditis and was in a thyroid storm. I was losing weight, having panic attacks, irregular heartbeats, diarrhea, and could not sit still. My GP looked at my thyroid blood tests, told me they were normal (they were not) and that I was a nervous mother. Sigh. I found a new doctor who knew what they were doing.
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We live in an era when, largely because of the bias of insurance companies, the most highly compensated physicians are surgeons and others who perform invasive procedures.
It is always refreshing to read about a triumph of an internist or other “thinking specialist” who comes up with the correct diagnosis to explain a confusing group of symptoms.
These non-cutting women and men would make Sherlock Holmes – and Dr. Watson, of course – proud. They improve the lives of suffering patients without exposing them to the risk of unnecessary injury from unnecessary surgery.
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Fascinating, as always. Thank you for this series!
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30 years of general internal medicine and I’ve probably seen 20-30 patients who carry a diagnosis of MG. I could name many other diseases I’ve seen 0-3 times. So rare is relative and I’d expect ophthalmologists and neurologists to be attuned to the diagnosis. Possibly fluctuations in symptoms as well as laterality confounded the diagnosis. And certainly the distinction between blurred vision and true diplopia is important.
Stress-caused (as opposed to stress-sensitive) or somatoform illness is always a difficult diagnosis and one of exclusion. I’ve seen enough patients with psychiatric disease and other serious disease that somatization invariably leaves me wondering if I’ve missed something. Other comments have me wondering if I fall back to this more often in women. I hope not.
Glad she finally got a diagnosis. Another excellent thought provoking article and a good object lesson.
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@Charles Carter
Some of us patients also are often unsure if symptoms are just a variation on normal -we don't need a Dr. to suggest that they are "in our head" because that's what we already think. We can be fairly easily convinced to abandon efforts to find a better diagnosis.
And the perception of stress increases when our energy and health flag, so that while stress itself can be damaging, we also experience it as overwhelming when illness is sapping our energy.
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@Charles Carter Although somatization is definitely real, stress or a psychiatric etiology is the last thing to consider when evaluating patient symptoms. I am not a fan of the "stress" diagnosis. When patients ask why a problem was not figured out by another clinician, I tell them that thinking is hard work and people in general try to avoid hard work.
20
Nice way to toss colleagues under the bus there. You can think very hard and try very hard and still not come up with the right diagnosis when it is rare or atypical. Maybe you could say that it is very hard and leave it at that - rather than saying that it is from a lack of care or effort?
3
I was diagnosed with ocular Myasthenia Gravis in 2006 and was lucky to have an ophthalmologist who thought outside the box when symptoms first presented themselves. Like the patient in the article, I was negative for antibodies but had a droopy eye that my observant wife first noticed. Having good access to medical care in a larger metropolitan area was key to my diagnosis. But please don’t negate the stress component as it’s well-documented in the medical literature that all autoimmune diseases, including myasthenia, are exacerbated by stress. Furthermore, symptoms can progress rapidly during a serious illness, like flu or pneumonia. Besides medication, managing stress, staying fit (especially upper body muscle tone), and doing your best to avoid ordinary illness by staying current on flu shots and other vaccines is key to managing this frustrating disease.
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@Mike Goodrich
There is a difference between the “stress component” that exacerbates MG (and other medical conditions) and having a medical condition that is ignored when “stress” is the diagnosis.
4
Once again a woman’s symptoms get passed off as stress or other non-organically caused problems. Many years ago I saw a child who in addition to autism had weird shaking and verbalization before bed and upon waking. The pediatrician was sure it was behavioral. To placate me he order an EEG which was normal. I sent her to a developmental pediatrician who agreed with my concerns and she was referred to the head of pediatric neurology at a large teaching hospital. After a 48 hour continuous EEG she was diagnosed with Nocturnal Frontal Lobe Epilepsy and was only the second case he had ever seen.
All too common for women and children to be told the problems are just the stressors in their lives.
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Its even worse if the woman already agreed to see a psychiatrist for “anxiety” or “depression”, let alone anything else. Once slapped with a psych diagnosis, any and every symptom conveniently becomes part of it- including the nasty serious side effects of the medications.
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@JudyH, Ph.D. You are probably right but my husband was told the pain in his side was “stress” until a female M.D. took the time to discovered that a surgical sponge had been left in him after an appendectomy.
15
Exactly the point I was going to make.
2
When I read this column, I am usually struck by the random “luck” that connects the patient, often after many unsuccessful tries, to a doctor with enough knowledge (and/or persistence) to correctly diagnose their problem. What of all the previous doctors who got it wrong – in this case, 3 ophthalmologists and a neurologist? It seems like a real deficiency in our medical system that in most cases there is no way for these doctors to learn from their mistakes or lack of knowledge -- apart from reading this column! Usually when a patient encounters an unhelpful or unknowledgeable doctor (like the neurologist here who, when presented with the patient’s normal CT and MRI scans, simply ascribed her symptoms to stress), they simply move on to another doctor in their search for help. No one goes back to the docs who got it wrong to inform them of their errors and by broadening their knowledge, prevent them from repeating them. I’m not sure how this problem should be addressed, but it seems like it’s something important for the medical community to consider.
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@SML Valid point but I would opine it’s MD to MD where that should happen. Peer review and peer interaction may (“may” being the operative word) overcome bias and arrogance if that’s the reason for dismissive diagnoses.
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@SML Absolutely true! Every day, patients have to give up on their doctors and find another one who gets things right. But I've never, ever heard of anyone trying to inform the first doctor of the correct diagnosis. If the doctor wouldn't listen while the patient was asking for help, why expect better when the patient is coming back with criticism? Plus, who wants to wait for an appointment, and pay for it, after giving up on that doctor?
3
another possibility is Chronic inflammatory demyelinating polyneuropathy (CIDP) which is an autoimmune disease of the peripheral nerves. I have this disease but when i subsequently developed recurring diplopia, NONE of the many neurologists (some of whom claimed to be CIDP specialists), ophthalmologists, or neuro ophthalmologists knew that visual problems, including diplopia, are a part of CIDP and none apparently did a simple Google search of 'CIDP diplopia' which returns many reports in the lterature connecting CIDP and vision problems. It is not just that CIDP is a rare disease, which it is, but that many doctors stop their medical education once the finish their training.
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@Richard Gaylord All doctors are required to undergo constant CME - Continuing Medical Education - and pass exams regularly. I think the issue is more subtle. Doctors and patients can see problems differently. The patient sees the problem as diagnosing and resolving her symptoms. A good doctor sees it much the same way. A bad doctor sees the main problem as getting the patient and her paperwork out of the office as fast as possible.
27
The optic nerves are part of the central nervous system.
2
CIDP should cause changes on MRI.
1