A friend just told me about Lisa Sanders and the show Diagnosis. I started crying. I've been sick for years from mold exposure at a hospital where I worked. My symptoms are extensive. 8-9 years of trying to find out what's wrong. Drs can't find out why I'm so sick. My husband has given up on me. I can't get on any type of assistance. I have no insurance.. how do you explain to someone that your slowly dying, yet are not believed.. I was even refused service at a free clinic.. how do i get in touch with this Dr? Can anyone help? I have no one who will help me.
4
@Vicki B I hope you get a reply. I put a similar comment here almost a week ago and nothing. I guess I’m just not interesting enough medically to be bestowed a reply. But if that dr likes to write my and my family’s story could make a best seller, lol.
But it’s so frustrating when you feel like no one even hears you, never mind listens or tries to help. It’s devastating. So I hope you can find some answers even if you have to get the equivalent of a medical degree by researching the heck out of it yourself. 💜
2
I am surprised at The New York Times producing this series; it's more like something a tabloid would have thought up. That said, if everyone fares as well as Angel, the patient in the first feature, still this series may be the model for a new genre of TV survival shows. An educational journalistic endeavor, on the other hand, needs to show how Dr. Sander's chooses her patients, what has gone wrong so far in diagnosis and treatment, why and how the new diagnosis is chosen, and recommendations for better outcomes for patients.
3
My partner and I are binging the show and it is utterly fascinating. It’s so heartening to see how people all over the globe are willing to come together to help one person they don’t even know. It gives me hope in the inherent good of humanity.
3
I love this show to give hope and help to ppl that have been through it all for all the let downs. I have been misdiagnosed for so many things. I have learned just to live with it and really gave up. I have had breast and feet pain from the age of 21 and now at the age of 35 the pain is more all over.(more to it but not enough space) I have had so many diagnoses and I come home so excited and then it turns out after all the test, I kind of have it but its not a 100% and start new meds and start all over again just for a let down and oh the side effects. I 'm on some meds that help about 30-50% and I have learned that is as good as it will ever get. It is just heart breaking to see how we are treated as patients. It is just better for my over all health to just live with the pain than having to miss tons of work and time with my family for nothing. As a woman it is always oh its just hormonal or in your head. I really have no idea why any one would choose to act like they are in pain. Who doesn't want to live a normal life? Who wants to spend all your money on medical bills? Who wants to take all these pills? Who wants to go from an athletic happy person to someone that is just trying to make it day by day? It is just sad. It is not in our heads!! The pain is real! You are someone that is trying to listen and help. Makes my heart happy to see this. Thank you for the time you are putting in to help all these patients in need.
1
I will definitely have to watch this series. I understand there are patients who are hypochondriacs or just looking to score some pain pills. I just wish all doctors approached their patients like this and would give them the benefit of the doubt. I have found that, especially being a female, that my voice goes unheard. I have struggled with hypothyroidism for more than 34 years. I was 16 when diagnosed. I have taken the medication and been tested but now that I'm 50 I can't get anyone to listen to me about the constant pain, fatigue, my face is constantly red and I get bumps (not pimples) but I'm fine because the "TSH levels are holding".
2
Have enjoyed the episodes so far and found them interesting, but Dr. Sanders missed an opportunity on the "Rumination" episode to explain what "psychosomatic" means. the young woman had been told something was in her head with the inference that this was a choice. Psychosomatic disorders are not choices--they usually are responses to stress often in the context of unusual events and their may be underlying physiological processes related to emotion and autonomic nervous system functioning. These are real physical problems and although the primary intervention is behavioral it recognizes that the symptoms are expressed physically and may have what patients see as a physiologic component. The explanation of Rumination Syndrome sounded a bit like an unusual example of Pavlovian conditioning, perhaps in combination with an existing asynchrony in respiratory functioning, judging from her respiratory and blood pressure response. Instead of seizing on a teachable moment for patients and physicians, Dr. sanders punted and left the erroneous inferences about psychosomatic disorders stay there. Even with somatizing or histrionic disorders which seem even more divorced from physical causes, there are physiologic responses with real, measurable and should not be discounted. I'm a clinical psychologist and used to do a lot of diagnostic consultation, so the problem of not explaining psychosomatic and other disorders with psychological components is a neglect of an important lesson.
8
I am 100% for patient education and support, and of course for correct diagnoses. But this show turns the patient experience into a Hollywood-esque show with Dr. Sanders as the star and the patients ever so subtly exploited. The glorified trip abroad, the music, the heavy handed direction and the soap opera like drama is cheap. That doesn’t negate the suffering these folks have endured. I am simply commenting on the show as a tool. There is something called Telemedicine. It is a fabulous and miraculous tool for diagnosis and patient care. It has enabled long distance access to superb academic and tertiary care medical facilities. It needs to be promoted.
5
How do you get your story told
I know nothing about Lisa Sanders, but the NYT should know better. I’ve watched three segments, thinking it would get better, but no luck. Lots of redundant chit-chat and exploitation of ill children. If the attending medical professionals are so incompetent, Sanders should report them to authorities.
And the parents are no better. I was especially upset by the mother of the little girl with the gene mutation. Granted, the NIH did err by not notifying the mother of results, but was she too busy on Facebook to make a call herself?
Who pays for these trips to Italy and the Netherlands? If the NYT, that should be made clear.
I give the show a thumbs down.
2
Finally, something good coming out of internet connectivity.
2
This will be a first for me: Despite my firm policy of never, ever watching Reality shows, "Diagnosis" looks like a worthy attempt to solve medical mysteries. Since I love mysteries and and because I found the preview to be interesting, poignant and charming, I am going to check this show out.
BRAVO, NYT and Netflix!! You are doing something extraordinary for the whole world along with being inclusive, compassionate, educational, inspiring and brilliant. Hopefully, this will be the spark that breaks down barriers and unites all of us for the common good. Major thanks to the featured people who allow us into their lives. How brave of them! And, of course, the medical professionals who dedicate their lives to us. Exceptionally well done!!! ONWARD!!!!!!
6
If patient #1 had been referred to a rheumatologist or neurologist by her Las Vegas physicians, or by Dr. Sanders, the diagnosis would have been made by a muscle biopsy or by genetic testing and the trip to Italy would not have been needed. Same patient should have been covered by the ACA, Medicaid or her patent's insurance if she was under age 26. An example of why "preexisting conditions" should be covered by all insurance or better yet, why universal health care is needed here as in Italy and other developed nations.
16
I watched season 1 episode 7 with Ann. I just wanted to send her a message to seek out the suggeted diagnosis. I had the same experience with fibromyalgia in the late 80's early 90's, it was a catch all and doctors said that oy was in my head. I have learned over the years that there are certain doctors that have a god complex and that if they don't know the answer it must be in your head, that you're the crazy one. I would not allow that diagnosis because it felt like it was a catch all diagnosis & for crazy people. It took some time for me to accept my diagnosis and realize that what I have has always been there, but that it didn't have a name until they came up with it. There were just doctors that really didn't really understand the diagnosis themselves. I have had that situation in a couple of other health problems where the doctors told me it was in my head. My response back to them was "No, it is not in my head or mental, it's you who does not know the answer so to appease yourself you say it has to be in my head." This response shut them up and they would take a step back. I was right in all my illnesses & the doctors that said I was crazy were WRONG. It takes finding the right doctor that does not have that god complex, one that is sincere like Dr. Lisa Sanders and others like her. I love this documentary show. It is a wonderful way to get help. Ann, hang in there, don't let a stigma keep you from a certain diagnosis because you're afraid of what others think.
8
As a physician who did comment on Lashay's recurrent emesis I watched Episode five and found Dr.Sanders made the show about her and not the patient and also found that her certainty that she was the only physician involved in the young lady's care who read every word of her case history probably not true for I read every word and I am sure other physicians did and found her dead certainty that only she among all the physicians involved had empathy and only she knew how to present a diagnosis to a patient in a caring way was off putting.
In any event at the end there was no diagnosis only Dr. Sanders opinion and the mother refused to accept the diagnosis.
5
I suffer from Chronic Lyme disease, a diagnosis that has be refuted by most physicians and has led to much controversy. The number one problems with this disease is the lack of a reliable diagnostic test. I was tested FOUR times at various medical facilities and each time had a negative result (Western Blot and a spinal tap) and yet, after suffering for 15 months, that I had a case of RAGING Lyme disease. He had called for the combined results of all those Lyme tests and I had eleven bands positive. By this time I could hardly walk or feed myself because of my right-sided weakness and partial paralysis. I see that same old attitude regarding Lyme testing is apparent in your series with two of your patients experiencing symptoms similar to mine having a Lyme diagnosis summarily dismissed after one, most unreliable test, being preformed.
I love your show but you need to do more research on Lyme disease and quit taking the status quo dismissal of Lyme as the culprit in some of these cases.
4
@Ruth Herdahl Neumann. yes and ironically this series features a Yale physician - Yale being arguably the worst culprit in the denial of Chronic Lyme and associated tick borne diseases.
1
A competent medical consultant ALWAYS begins with a comprehensive, independent, careful, and complete history and physical examination. Thereafter, DIRECTED testing should be undertaken.
At times, we are called upon to alter the proper course of medical care, but that should be the exception, not the entertainment.
Reality Show medical care is not a substitute for truly professional medical care.
1
Watched a few of these - interesting but very frustrating. The lack of affordable health care services is maddening. The young woman with seizures gets diagnosed with Lyme and gets worse with treatment but anyone who has treated Lyme know this is not uncommon (die-off). But in any case we aren' t shown if there was follow up the Lyme doctor or anyone else to get a better treatment protocol. So they gave it all of 6 weeks of treatment and seem so eager to drill holes in her skull to place a computer. The vet with Gulf War Syndrome was so obvious as a possibility one has to wonder if doctors ever read a newspaper.
4
I hope Dr. Sanders reads this comment. I just wanted to applaud her tenacity, empathy and kindness toward people who are suffering and in need of answers. I saw the series, Diagnosis, on Netflix and it was very powerful and educational. Please continue this much needed work!
8
Netflix’s Diagnosis is an amazing tool to help people that have the same problems dealing with the same answers from doctors. The show is a game changer. Thank you New York Times with the feature editorial as an outlet for people dealing with sicknesses to be their own advocate.
6
Hi, I am not sure what happened to my first comment so I am resending, sorry. Not sure if you read these comments Dr. Sanders, and I recognize that it has been a year since the making of this show. I wanted to ask in response to seeing Jo’s case in ep. 7 if he has been tested for Vitamin B12 deficiency/ PA? (Active B12, MMA, Homocysteine, Folate?)
Often B12 deficiency/ PA can be mistaken for MS and can cause very similar issues that he is going through.
https://www.b12deficiency.info/
Hi, not sure if you read these and it’s been a year now since the making of this show, but I wanted to ask in regards Jo’s case, has he ever been tested for B12/ Pernicious Anemia? (Active B12, MMA, Homocysteine, Folate?) alot of the symptoms he is experiencing are similar to that of B12. Even MS is often mistaken for B12 issues.
Also just wanted to say, that I enjoy watching the show House very much, and think what you’re doing with this is amazing!
I just finished the first episode of Diagnosis. Thank you for making this platform available to help offer relief from so much suffering.
Maybe the next project could be finding a solution to the greed of the healthcare system of our country. The contrast of the financial strain without solutions in the US with Italy's more humane and effective system is beyond frustrating.
6
I have never read this column. I could barely make it halfway through the first episode. Nothing about what I saw rings true to me. What I see is exploitation.
2
Really amazing show. More episodes need to be made! Having an undiagnosed illness for a year that turned out to be small fiber neuropathy (still unsure how I acquired this permanent nerve damage), I have a certain emotional investment in this program.
This case had me severly upset. I am happy the show was able to help him.
How can his employer deny him early retirement or disability retirement? I hope Willie was able to find someone to help him with this aspect.
3
The Times is acutely aware that its reading demographic is getting increasingly older! Older people are much more prone to developing a range of sicknesses! This is a wise move to protect the bottom line! This is keeping with the eyes on the prize! For without the subscribers, the most referenced news organization would wind up in the dustbin of periodical history! I congratulate The New York Times for this bold and helpful move!!!
12
My mom came into my room crying after finding your show. Because she understands how those parents feel dealing with so many doctors but not knowing what’s happening.
I’d like to know how to submit my story because I live with a very rare genetic condition called Ivemark syndrome and no one knows how to help me with the health issues I’ve been facing for the last 9 months that may or may not be tied to it.
5
I’m wondering how to submit my case to Dr Lisa Sanders.
I’ve seen a multitude of Doctors and specialist and had to have a random emergency amputation. My internist and surgeon say I’m an enigma.
Please share if anyone has her contact info.
Regards
KE
@Kerrie
Yale school of medicine. She is an attending physician at Yale-New Haven Hospital.
Perhaps the NYT will allow me to suggest an authoritative text in regard to episode number five, the adolescent who became ill suddenly after a vacation in Costa Rica.
"Seafood and Freshwater Toxins: Pharmacology, Physiology, and Detection." Edited by Luis M. Botana, Third edition, CRC Press, 2014. ISBN-13: 978-1-4665-0514-8.
I would suggest chapter 32, Ciguatera Toxins, page 925. Of course that is not the only source on this subject but it's better than scanning the internet or crediting mass media crowd sourcing.
1
In the hands of skilled producers, a documentary about Angel's condition, diagnostic misses, and crowd sourcing could have been as engaging as the reality tv approach if not more.
I’ve enjoyed reading Diagnosis over the years. Last night I watched the first episode of the series. What struck me was that Angel did not receive the care she needed because she did not have the funds to pay for it. She suffered for years and they could never diagnose it more deeply because that costs money. I’d hope that seeing the way other countries provide healthcare to ALL of their citizens will be instructive to people in the USA. Having to declare bankruptcy in your early twenties due to health care costs doesn’t seem right.
20
I must say this is the most moving, interesting and real documentary show I have seen in a while! What you have done is simply amazing and just makes me subscribe to NYtimes even though I never find time to read it. The creators of the show and everyone in NYtimes who supported and made it a reality deserve huge respect and should be proud of the results. Great idea, perfect execution and best of all real, helpful results for the patients. Thank you for doing this!
6
Hi! I love the column and read it passionately so I was intrigued to watch the series. I just watched the first one. But here is my problem- other people who were filmed responding to the story said what it was - CPT2. But somehow she had to fly to Italy and only through those wonderful physicians could she get her diagnosis? Even though one researcher was in Massachusetts and another in Virginia. Why did she need to go to Turin? Clearly we could have had her tested here? It was odd, and then the show never circled back to those people who had it right immediately. Help me understand this...
10
@Amy S. I'm just guessing, but it might have been that the Turin lab and doctors did not charge Angel anything for the extensive testing and lab work. She was already heavily indebted to U.S. doctors and hospitals so they might have been reluctant to take on a non-emergency patient that could not afford their services.
6
It's wonderfull - interesting and moving. I hope your healthsystem will improve soon, debts because of medical bills for hospitalization.. breaks my heart.
6
I have not read all the comments but it struck me in the first episode that the US health system failed to run a metabolic panel on Angel after nine years of expensive doctor visits that clearly pointed to metabolic issues with black urine. Ironically, doctors in Turin Italy did this immediately and followed up with a genetic analysis to pinpoint the diagnosis. All for free!! This is really an indictment of the costly, money driven US healthcare system.
21
Everybody has cable and Netflix and a smartphone. Right? Not right.
1
I LOVE the column. Please distribute the show more widely than Netflix, how about PBS or online streaming for NYT subscribers? The endless cost of more and more services isnt affordable for all.
7
@mendela
Agree! We're not 'Netflix-ers,' at least not in the modern, current sense.
I hope the articles / diagnoses are still in text form on the Times; I hope this feature within the paper hasn't disappeared altogether.
Have to dig deeper on that.
1
I was shocked at the episode with the young girl with the vomiting issue that no one suggested Munchausen by proxy syndrome. Anyone else think that? The whole thing seemed very suspicious to me. I hope this young girl can find some help for WHATEVER is going on.
5
@Anna
I just watched this episode and thought the exact same thing. It was very disturbing. Atthe very least her situation should be closely monitored.
2
@ArtIsWork
Who controlled the editing, commentary and presentation of that 'case' to the public? Not the family. It's easy to suggest things when one controls the message.
2
@Anna
Plenty of people suggested that in the comments when the article first appeared in the NYT. It doesn't really fit the history and symptoms.
1
I watched the first of the series today. This is extraordinarily well done. The subject of the first one--Angel--is compelling and the breadth of her story is amazing. To be short, it's time well spent.
2
I am watching the first episode of “Diagnosis” on Netflix. I know that the subject Angel must be in extreme pain. It made me sad to see her decide to exercise by walking in the sweltering heat along a dusty Las Vegas highway. I know that she feels that being athletic is a big part of her persona and lifestyle. But given her disability, she needs to do her exercise in a more protected environment. She should go to a gym or health center where there is a first responder ready to help her if necessary—and the equipment that might be needed. In the video, she could scarcely be put in the car by her companion given the excruciating pain and not being able to straighten her legs.
Maybe she is telling us something. Maybe part of her problem comes from doing extreme sports—as she has told us how active she was in athletics, being on four teams, until her symptoms worsened.
I saw a show on TV where people help overweight people get in shape. I was appalled by what they put these poor subjects through. A severely overweight man had to ride many miles on a bicycle in 90 to 100 degree heat; he ended up in an ambulance on oxygen. Several others were mistreated in similar ways.
There is a way to be active even if you are symptomatic. One thing to consider is swimming or exercise in the water: you won’t be overheated and the water will take the strain off your joints. And there will always be a lifeguard present if need be.
7
Dr. Sanders - Brilliant idea, and it is a fascinating show. It got me crying a few times seeing how so many people pulled together to help someone they do not even know. Those Italian docs were great. Thank you for this opportunity to see people from all over the world connected in such a unique way.
6
We are starting the first episode now! NYT please keep up the multi-channel approach!!!
1
Love this column and am excited to watch the series. Thank you New York Times for creating content for Netflix and not just Hulu.
1
I could not love an idea for a reality show more than I love this.
Everything about it is so right.
4
@Anglican I agree - it's very effective and what a positive approach to say the least.
I am SO glad to see this! I love her column!
3
Folks, please do yourself a favor and watch this show. It is absolutely fantastic, like moving version of each column in novella form. I just finished watching the “ Willie “ episode, again, and am crying. I desperately wish for a follow-up column on these brave and wonderful people, in a year or two. I really want to know what happens with them. Thank you, Dr. Sanders. This is the best Series I’ve seen on TV for many, many years.
Congratulations.
12
Ah. There it is. episode five. Vomiting and walking funny. That's the one. The readers never were provided with the promised follow up. I had a few questions that I was curious about and am still disappointed the doctor has not provided any further information.
I used to live in the sub-tropics, in Key West, so I noticed that particular article. I recall that of all the various specialists consulted back in their landlocked state of Utah there is no mention of a tropical disease specialist being consulted. Why not? Is that an "Oops"? Someone in the comments suggested Ciguatera poisoning, but that's only one of dozens of fish toxins prevalent in tropical waters. Much is made of a raccoon attack but no mention at all of the possibility of toxic fish poisoning. With the change in climate the incidence of such poisoning is expanding and increasing. It could depend on a person's choice of menu or what was caught and brought to the kitchen for that day. It could be the cleanest kitchen in the country. There have been reported cases in Costa Rica. Maybe that's the mystery the reader and viewers are supposed to discover for themselves. I wonder.
3
@Aristotle Gluteus Maximus They did find an answer; Rumination Syndrome. This girl's mother is controlling that situation and refusing the help offered. She may be invested in having her daughter having health problems. It is sad that this young lady is not getting the help that she needs. I hope she does eventually get it.
@TenToes
Rumination syndrome is just a description, not a diagnosis.
The article is severely lacking in pertinent detail. There is no way to know what is really going on if the author doesn't report everything. The medical team would be negligent if they did not consider toxic fish poisoning. The symptoms are a very close match for Ciguatera poisoning as is the incomplete history. Maybe that's why there is no follow up on this case. The doctor would be admitting negligence.
Not many doctors are not aware of it and certainly not in distant Utah. Most doctors in tropical areas do but even some physicians in Florida fail to consider it.
@Aristotle Gluteus Maximus One of the first things physicians do is inquire about foreign travel; they probably checked ciguatera and many other types of poisoning. Her clinical picture and behavior strongly suggest a functional cause. Nice try, though.
Need to have that pediatrician, Nina Gold, on the show more!
1
Thanks to NYT and Dr. Lisa for presenting this informative and interesting series. We have all had unusual cases that defy our typical work-up and treatment. The advances in genetic testing are important for diagnosis, but the clinical history and physical are still the cornerstones of medicine in the 21st century.
7
I enjoy reading the column but usually miss readers’ solutions.. I wish they were published on the same day as the symptoms!
16
I have been a long term fan of this NYT series. Unfortunately, I will no longer have access to it as I don't subscribe to Netflix. As a FYI, it appears that even though my NYT subscription price has not been reduced my service has; eg, loss of these articles.
18
Did the article say the 7 episode series means the column is ending? I thought the Netflix series was a bonus..
4
@M
Glad you like my column. I'll still be writing it every other week (more or less). These stories were in addition to my usual features.
33
@Lisa Sanders MD It’s a wonderful series—in print and on film. Thank you for all you do.
6
"“The generosity of the people who read the column and were willing to spend real time trying to figure out these mysteries — to me, that was just extraordinary,” Dr. Sanders said.". it isn't generosity that motivates people to try to figure out these medical mysteries.
2
I'm a big fan of the column and would definitely watch the show but I don't have Netflix and have no plans to get it. Don't need an extra monthly expense. I spend $100/month on TV with Spectrum as it is (1 DVR, HBO, and cable; no deals ever for long-time customers). Very disappointed that Netflix is the only way to see this.
17
@marge201: Me, too. I was really excited that this was going to be a "thing" and then disappointed when I realized I'd have to get Netflix. In addition to the cost, there is also the issue of having to watch programs on my computer, which is not nearly as good as seeing them on TV. I wish they had simply worked with one of the cable companies (preferable one that is part of the basic cable package) to bring this to a wider audience.
9
@marge201
A somewhat similar series, Chasing the Cure, debuts on TNT and TBS Aug. 8th. It'll be live with Ann Curry hosting.
9
@marge201
Hi
We too were on cable with Spectrum, paying We decided to get off the cable and we now use a Roku for Google YouTube TV. We have access to all of the sports, news, and movies and save 45.00 a month as we still need Spectrum for the internet. The savings would cover the price of Netflix and you'd have access to this series as well as their other originals. See if you are able to get this in your area.
5
As a physician, I can't help but think that we are still at the infancy stage when it comes to medicine.
We are the last industry to 'adapt' to technology and are still lagging so very far behind. We could be creating national medical databases to upload unusual cases to get shared opinions from other specialists around the world, we could be uploading cases where we have made mistakes so that others can learn from them, we could create a national patient medical information learning website to teach patients the basics of healthcare but instead we have electronic systems that don't communicate with each other, we lack a centralized patient database which could be used to assess outcomes, and we continue to scold patients for resorting to Dr. Google but don't offer them alternatives. We have a very very long way to go.
104
@doc007. You are so right. I have Sjogrens Syndrome and Rheumatoid Arthritis and can no longer take Methotrexate due to elevated LFTs. I had DRESS due to a severe allergic reaction to Sulfasalazine that caused a 103 fever and I went into Afib last June. I was hospitalized at Yale New Haven Hospital. It was scary to see a doctor from Rheumatology, Dermatology (total body rash), Infectious Disease staring at me like deers caught in headlights. The only thing that helps was Prednisone at 100mg. Now it's 13 months later and I have incredible fatigue and I'm on Arava with little to no relief. The only suggestion doctors have given me is to loose the 20 lbs I gained from months on Predisone. 10% of people die with this diagnosis. Thank you for your comments. Michele DeMusis in New Haven, CT
15
@doc007 Doc: In the US SYMPTOMS are treated with drugs or surgery. Shift to tracing the underlying causes, and you would see a huge drop in med expenses, and a healthier population. Eat well. Eat less - usually. Move about. Exercise. Help others; help yourself.
8
@doc007 For all the reasons you mentioned, China has implemented greater sharing of data with the specific goal of patient welfare. China seeks a "wellness" system rather than a "sickness" system like the US. Until the US breaks the insurance stranglehold which is the only beneficiary of America's outdated model, the US will lag China in (yet) another area.
5
CONGRATULATIONS! great idea!
6
Great news article in an earlier Times edition:
"When the Illness Is a Mystery Patients Turn to These Detectives - The Undiagnosed Diseases Network"
https://www.nytimes.com/2019/01/07/health/patients-medical-mysteries.html, January 07, 2019
5
What is lacking in the trailer and accompanying text is any evidence that Dr. Sanders or the NYT or Netflix will attempt to test the hypothesis in a formal way that the "wisdom of the crowd" gathered through social media will make correct diagnoses and lead to better outcomes.
How formal the test should be can be debated, but at a minimum 1) a running tally of diagnosis-made vs. still-no-diagnosis should be kept, 2) the accuracy and legitimacy of the diagnosis should be determined by an independent panel of medical experts (not readers), and 3) treatment and follow-up should be recorded, including measurement of change in number and severity of symptoms, and assessment of change in quality of life, in any.
What I suspect may happen is that narrative arc will drive this project, not "equipoise" (a fancy word of having a truly open mind about the worth of a diagnostic strategy or treatment). I suspect that Dr. Sanders, the NYT, and especially Netflix, want the project to demonstrate the "wisdom of the crowd," and there will be an impulse, conscious and unconscious, to leave out the parts of the story that don't support that hope and belief. It's noteworthy that in the comments published so far, one of the few skeptical ones is from a doctor who says he stopped reading Dr. Sanders's column long ago because she leaves out or ignores important facts and findings. That's something physicians sometimes must do, but only after acknowledging what they're doing, and why.
12
@David Brown MD
Well doc how about you practicing a little 'equipoise' and realize that all medical wisdom does not come from medical experts. If you read Bellevue by Shinsky you shall learn how flawed theories and arrogance by the top medical folks of the time, let to poor medical outcomes. So lighten up and believe that your fellow man can review the information and come to a informed decision by him or herself.
15
@David Brown MD
I noticed that Dr. Sanders was leaving out a lot of pertinent information just on the first article I came across, episode number five above. I have to think it was deliberate, for entertainment value. I view these types of entertainment with a jaundiced eye and wonder if they really are in the patient's best interest.
It should be noted that Dr Sanders was one of the technical advisors for the hit TV series 'House MD'.
This might be off topic but just maybe we need to find out why there are 33 countries healthier than we are. I am not talking about health care or health care cost. I am asking why do so many of us get sick in the first place. There is a deeper issue here and someone needs to look at it.
59
@Allan: Because people in those other countries have some type of Universal Health Care (each country has its own plan), most of them have preventive care starting before they are born - their mothers get good prenatal care. They go to all of the necessary "well baby" and routine check ups as children, so it is natural for them to see their MD on a regular basis when they grow up and are in charge of their own appointments. A lot of illnesses can be prevented or mitigated if caught early if you are able to see an MD before things get really bad.
22
@Allan-Looking at food, diet, and pollution (plastics, herbicides, pesticides, hormones in beef/chicken), etc. -- I think the question should be how can we not get sick? Why the exceptions?
8
@Ann Yes. And, it is deeper than that. Eat less, Eat well. Exercise; move around. Help others.
4
The link to the “free trailer” on Netflix is not “free” as it requires one to signup for a so called free trail.
Typical for Netflix and the NYT should insist to remove this requirement.
13
@Drewpy you’re able to view the trailer on Netflix’s YouTube channel!
8
@Kinsie - But just the trailer, right?
2
I realize that even in these times, not everyone has access to the Internet, maybe even through the computer centers in public libraries like in my city. But those who do have access can do simple searches with some wording in them, to find some "answers" on their own. Actually, it's become a kind of physicians' lament to hear many of their patients now saying, "I just saw online..." I guess Dr. Sanders' supervision is a welcome addition to this process.
3
Crowdsourcing possible diagnoses is an interesting way to solve these puzzles; however, how are the volunteers being compensated? Is this the same thing as crowdfunding medical problems, where the health insurance companies should be picking up the tab? I share the passion for good here, but why not hire a bunch of researchers and pay them very well for the same exact work?
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@Rhett: I don't understand this comment. It's not as if the person who comes up with the correct diagnosis (who may not even have an MD) is then going to go on to treat the patient.
After all, no one pays you if you solve The NY Times crossword puzzle.
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@Stephanie Actually there ARE platforms where the 'problem solver' does get paid. [CrowdMed i think is one]. And if someone comes up with an herb the patient should take there is nothing to 'treat'.
Excellent! This is exactly what those theoretical mathematicians did in asking origami/paper folding artists and enthusiasts to participate in exploring folding problems for DNA research in Between The Folds. Brilliant use of the creative to diagnose medical irregularities or problems. Won Erik Demaine a MacArthur genius award. Brilliant documentary by Vanessa Gould. I love the Diagnosis column and I look forward to the series! All creative thinking is applicable!!
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I lived with being misdiagnosed for +20 years. Lived thru all the challenges of anti-seizure meds and more. Lost my drivers license countless times per WA State laws. But the most challenging part was always running into docs that would suggest I did not have epilepsy. I would present their arguments with my neurologist(went thru 3) and would be told I had epilepsy. The last neurologist was willing to listen to my concerns and we started to examine cardiac possibilities. Turns out my heart would slow to 3-5 beats over 15 secs, then flatline for 30 seconds...then magically start itself backup. These cardiac events would result in me passing out. I have since been fitted with a dual lead pacemaker with no more meds. Leading a full and active lifestyle again. Would love to get a chance to share my story further if it would help others figure out their medical challenges.
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@Mike Hi Mike, I've had a very similar situation - seizures and syncope episodes where my heart would stop for up to 40 seconds (I had an implanted loop recorder). I now have a pacemaker, but still occasionally have "seizures." Two years ago I was also diagnosed with Lyme disease, which can cause carditis - Lyme infects the heart tissue and can cause electrical failure. There's no way to prove my cardiac issues were caused by having undiagnosed Lyme disease for years, but it would make plenty of sense....
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The New York Times with it vast readership, a very well read, intelligent readership at that, has always had the ability to tap into that collective knowledge. Health is just one area. The medical industry is just that, an industry with a profit motive, and that industry will work to confuse you and keep you in the dark, as a healthy public is bad for business. There are good doctors out there, and the right cures, the right treatments, and we the people can lend a helping hand and guide each other to the right path. We only need the meeting place and the NYT can be just that place. Knowledge is power.
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Unusual diagnosis are some ways interesting, however common diseases that manifest in unusual ways are even more interesting for a practitioner. This may be the same thing in a way. To diagnose a disease one has to take in account the statistical nature of how the signs and symptoms presents in a particular disease. For example it is possible for low thyroid patient to present with just a rash which is not a text book hypothyroid manifestation but rather extremely dry skin. A patient had seen a dermatologist for a rash, for a year with no diagnosis. However, when she came to me I went back to drawing board as it were and found that dry skin could be caused by a common disease, hypothyroidism. She was checked for this and had low thyroid function. The trick was to understand that her rash was caused by just her scratching the dry skin. That astonished me at the time because a rash is not a typical symptom of low thyroid. The diagnosis was made by a complication of symptoms. This is not that rare in medicine but certain diseases can obfuscate the presentation. That is why medical diagnosis is an art.
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@clif howell One of my daughters had thyroid failure around age 10. She had no dry skin, there was just a sort of rubbery quality to it.
But she slept 16 hours a day, had hair like straw, and huddled under a thick comforter on 90+ degree days in August. And she conversed like a pre-teen with Alzheimer's.
Not one of the 12 doctors we took her to over the next two years made the diagnosis.
Doctor #13 immediately ordered a TSH test and referred us to an endocrinologist on one of Maine's largest cities.
She mentioned that she had supervised our PCP's residency. OK. Only when she added, "If you bring a malpractice lawsuit, I will tell the judge that I'm sure the lab report [a result in the triple digits] was in error" did we realize how badly we'd been treated.
The PCP then prescribed a huge replacement dose instead of bringing her up to speed gradually, and
our daughter went absolutely bananas. I still shudder to think of how many brain cells she lost altogether.
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@MLChadwick
I can relate...back in the mid-60's when I was diagnosed with hypothyroidism at age 8, they didn't have a name for what I was experiencing or the eventual diagnosis. It was only in my 40's when I discussed with an endocrinologist that what I had was early onset Hashimoto's disease.
I appreciate the diagnostic procedures and tools that we have available now, compared to 50 years ago. There were no MRIs or CT scans; look up the term 'air study' (pneumoencephalography). That's what I had to experience a year after being on my thyroid medication when complications occurred. Absolutely - monitor your daughter carefully as she goes through this. My mother was fierce and my best advocate, and she put me in the care of a pediatric endocrinologist who was topnotch. If you can do that for your daughter, I would. Best of luck to both of you!
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@MLChadwick Sorry about your daughter. It is like I said that a common disease is the one that the doctors should not miss. The New England Medical Journal has a special section case report that is for difficult cases.
The first sentence starts with the brief summary of the case and ends with something like " the patient was transferred to our institution for further evaluation". The cases are usually very difficult and rare and only a few have enough expertise to diagnosis them. Now we now that if you are not getting a satisfactory treatment do not accept it and go to not just regional experts but national experts if need be! My father was defense attorney who was told he needed a cardiac bypass and because he had defended many physicians in malpractice, he was skeptical. He got a second opinion from the worlds leading expert at the time. He was told he did not have to have the bypass and lived to 95 some 20 years after the bypass suggestion!
2
As a physician myself, I long ago stopped reading Dr. Sanders column for two major reasons.
1. She often discounts information that is important apparently because it doesn't fit with the narrative she is writing.
2. Despite the fact that she frequently cites poor medical care, she never names those who provided it. If The Times believes what she is writing then why not name those hospitals and doctors who are providing this care if for no other reason than as a public service. It certainly had no problem in doing so in its recent investigation of the North Carolina hospital providing inadequate care to pediatric cardiac surgery patients.
As the truth is an absolute defense against libel, The Times should have no hesitancy about naming those in Dr. Sanders' column (and she has no problem naming those who provide quality care) unless it doesn't believe the truth of the stories she is telling.
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@Steve, these cases are presented as unusually difficult to diagnose. While kudos go to the physcians (and readers, and others) who uncover the correct causes, it would not be fair to make public the failings of the average practicianers who fail to take the further step, to listen for zebras.
As a patient, it is a reminder that medicine is a very young science. There is a measure of art and mystery in the ability of a clinician to read and relate with a patient. Second and third opinions may be invaluable.
5
Hallefnluya! It's about time. Of course people discussing medical issues in large groups, worldwide, will help. I had a problem a few years ago, arthritis in the big toes. It might sound like nothing, but the pain can be unbearable. I found a Facebook group of a few thousand others, all over the globe, with the same problem. It ultimately helped me decide on the right course of action, not to so surgery. We talked about the most comfortable shoes and shared advice on exercising alternatives. The group included a few doctors and physical therapists. I discovered how doctors in several countries were approaching the problem. And people shared outcomes of treatments. If nothing else the group was a great support tool. Because it was worldwide, someone was always there to discuss an idea, or to just listen.
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Getting info from outside the US medical industry is critical.
9
I was the topic of one of Dr. Sanders’ columns years ago (Diagnosing a Rash) when I had Rocky Mountain Spotted Fever—first diagnosed and documented case in Ulster County. The main thrust of the article was the working cooperation between my PMD and myself, the patient. Fortunately, I worked in the medical field for many years and had had the same PMD for about 18 years so I had good continuing care. And a PMD who listened to and respected my input and was willing to spend the time with me.
Can’t wait to actually see and listen to her on Netflix!
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@Rachele E Levy I had Rocky Mountain Spotted Fever too at age 14. I was bitten by a tick at Girl Scout Camp in the the Hamptons. I read your case.
This makes so much sense. The powerful hive brain of social media being harnessed for the benefit of medical need. While reading a recent mystery, I immediately recognized the symptoms of a young woman but in a veterinary context. The eventual solution to the mystery was a debilitating problem that occurs in dogs with mast cell disease and the medications prescribed to this human patient are the same that are sometimes given to canines to control symptoms. Had her information been more widely known and earlier someone might have made the same connection.
10
@Kim S the powerful hive brain didn’t work so well in our last election for president.
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@Mgaudet
yes, your so right! Lets hope it works before the next election!
7
What a wonderful idea! I would turn to Dr. Saunders column first in the magazine section. Her descriptions were fascinating and at times difficult to read. Her patience and kindness were always apparent.
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so happy to hear that the column has been expanded into a series to watch. I have been a follower of the series Mystery Diagnosis and look forward to expanding my medical knowledge .
Unfortunately, the column also points out the incompetence and dismissal by doctors of so many patients complaints and
how important it is for doctors to :think outside the box" and not just blindly dismiss patients symptoms.
11
oh this is so wonderful! I have been an avid reader of these fascinating columns for those full 15 years! what a great idea to expand the possibilities of treatments for those profiled in the stories, and ALSO reach millions more! I would PLEASE add a coda to the stories as a follow-up for each episode...especially when there has been NO definitive diagnosis presented. Good luck to all!
21
I am a regular reader of Dr. Sanders's column and almost always find it hopeful. My wife has an auto-immune disease that has led us to many doctors and many suggested treatments, none of which have been completely successful in dealing with a shifting set of symptoms.
I applaud Dr. Sanders for taking on this challenge through a medium that is often used for less socially helpful purposes. I and my wife will certainly watch the series.
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@BillM Have you read "The China Study", by T. Colin Campbell and Thomas M. Campbell ? Q: If undigested animal proteins leak from digestive tract into bloodstream, might they make it more difficult for the immune system to distinguish between the body's own proteins and foreign proteins?
2
As long as were dealing in hypothetical questions, what if social media wasn’t a complete waste of time?
13
I have an undiagnosed medical problem. It’s serious, and I have no idea when or if ever there’ll be a diagnosis. So I need to carry massive doses of prednisone with me at all times. So glad to see there is an upcoming show with Dr. Sanders. I cried when I watched the trailer.
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@Earlene I have to take and have with me steroids like Prednisone for adrenal insufficiency in order to stay alive. Rule this out with an Endocrinologist who specializes in pituitary and adrenal issues. In NY there is a good one at Sloan.
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@Stephanie Wood You will definitely be at your autopsy, but you will not find out anything new.
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