Would you be happy flying with a pilot who, upon having an alarm go off, reacted based only on the most common cause of the alarm?

Would you want an engineer builing skyscrapers who only factored in the most common failures?

In short, why does the medical profession consider it acceptable to consider the most likely risks, and not the range?

Thank you Dr. Mintz — do you post a warning on the front of your door to your patients — “I only treat common illnesses.”

Quite frankly, I think that anyone is a fool if one doesn’t go on the net and figure out what is wrong for oneself before going to the doctor. The only way to get the doctor to do what needs to be done is to understand how to set the symptoms out on a silver platter for him to “figure out” and think himself a genius. Woe to those who actually do need tests to figure things out.

I’m sure there are physicians who join concierge medicine to have more time to devote to quality patient care, but upon reading the contract, talking to MDVIP reps, I’ve discovered that they’re doing nothing to assure that’s what you get. MDVIP sent me another client’s personal info instead of my own when I joined, too. When I called, I was informed, “oh, yeah, we mailed a lot of them to the wrong people recently.” :-/ This is a sales operation, not a quality of care service.

I found a far superior and deep thinking primary care physician by researching PCPs in a 20 mile radius on ratemds.com, which I highly recommend over MDVIP.

I’m a zebra, too, but honestly, we all are becoming zebras as consensus guidelines that ignore complexity become the rule, making clinical diagnostic acumen extinct and, often, punishable as outside the community standard.

“We are also taught in medical school that when you hear hoof beats then you should think horses, not zebras.”

Personally, I think there are a lot more zebras than most doctors think. but statistics can only come from diagnosed patients not symptomatic patients.
I also come from the Cushing’s community (two children and a husband with Cushing’s) and know firsthand what Robin talks about. There are a lot of specialists who dismiss us – because it is too rare.
I’m guessing most rare diseases get the same treatment.

It took another 20 months before I was to get an official diagnosis. I have over 50 positive tests for Cushing’s. I have pathology proving that I have a acth secreting pit tumor. Yet, when I go to places like University of Penn Hospital, I hear things like “sleep apnea”, “overweight”, or stress. Testing be dammed. Pathology be dammed. Doctors reading material sent to them weeks in advance for an expensive out of state visit be dammed if truth be told.

We see it everyday in the Cushing’s community. It isn’t isolated to one part of the country. I am willing to bet it isn’t isolated to one orphan disease process. The problem is the mentality that it is to rare and it can’t happen to my patient. It starts there and gets worse when you add in insurance, hospitals, lawyers, and multiple doctors.

“Indeed, we are also reminded that an unusual case is more likely to be an unusual presentation of a common disease, rather than a rare disease itself.”

Yes, true, but with Cushing’s (and I believe other “zebra” diseases), we are more an conglomeration of usual presentations that are treated piecemeal rather than taken as a whole which should give a physician an “aha” moment. Frankly, Cushing’s patients can spot an “Cushie” a mile away, and our group has been proven right over and over if those persons chose to pursue the rigorous journey for testing and diagnosis. It’s not for the faint of heart, nor is it something that even a well person tolerates easily. The alternative, however, is sobering.

“But even as a specialist, I think my biggest obstacle to thoroughly investigating some cases is simply having enough time to do so.”

How would you feel if that excuse was used on someone you loved? On you?

You mentioned a forum. Mary O’Conner had Cushing’s in the 80′s with no support whatsoever, no help, no information other than what she gleaned at her library. Thanks to her hard work and dedication, she founded the cushings-help.com website and message boards, which she still single-handedly runs with it’s thousands of members. Without those message boards(forums), many of us would be dead or suffering with the disease. It’s strong, vibrant, and supportive community. We know how to test, where to test and when to test due to that. We know who the specialists are (and I don’t mean those who profess to be, but those who actually practice like they are), and they know us.

As for the internet, I did a reader’s take for KevinMD a while back on that very thing. I fight that battle with doctors constantly who say I “read too muc on the internet” as if they are the only smart folks in the world. I hate to break it to them, but not all of us practice medicine. It doesn’t mean we can’t learn.

As for the third-party payor system, I’m very familiar with that, too. I’m a fiscal conservative, and I would very much love to choose how and where I spend my money, since I now have to spend it where I’m told, plus spend out-of-pocket because the “where I’m told” isn’t cutting it. Thank you for mentioning that. I agree with and understand what you are saying regarding the reimbursements/payments. It’s not unfamiliar to me.

So, in a nutshell, those who are so sick are the ones who need to see the most change, yet we have the least energy and fewest “spoons” (see the spoon theory sometime) to do what needs done. But, we are still willing to try. That’s why I ask what I ask and say what I say. If nothing else, it starts the dialog.

Our blogs, including the two with which I’m associated, are to help those on the same path as we have been. Even more, they have a second objective: to hopefully make more folks in the medical community aware that we are people who suffer when we aren’t tested, diagnosed, and treated correctly. Finally, it seems they are also being used for a third objective with the need for change in our healthcare payor system. This was not an intended objective, but I’m realizing it comes with the territory of the other two.

Again, I appreciate your openness and candor. It’s refreshing.

Physicians get conflicting advice, of course, regarding this topic. We are put in a position to feel that we are responsible for ‘knowing it all’ and therefore, feel bad if we miss a ‘zebra’. On the other hand, there is the hoof beat and horses quote – the reminder to focus on the more common diseases and not to waste time (during initial evaluation) focusing on very rare possibilities. Indeed, we are also reminded that an unusual case is more likely to be an unusual presentation of a common disease, rather than a rare disease itself.

But this is medical school and residency stuff. Most practicing physicians learn that on the repeated presentation of a patient who has had no answer and still suffers, a more thorough look for answers is required. How many times have I sent patients for expensive or invasive tests – with only a dim possibility that anything would be discovered. Very rarely (but rewardingly) I have discovered an answer in this way. But even as a specialist, I think my biggest obstacle to thoroughly investigating some cases is simply having enough time to do so.

So what should you do? I guess it depends on your exact goal. Providing patients with a forum is helpful. The internet itself is helpful in dispensing useful information for patients.

I also believe that the ‘third-party payor’ system is at the heart of the problem. Medicine has been warped by this system in which insurance companies and government entities have decided to pay for things in a certain way. For example – by paying the same amount for a certain diagnostic code in the hospital (DRG), the hospital is rewarded for rapid discharges and will lose money the longer you stay in the hospital. This means that the more complicated cases get short shrift. By paying physicians by the office visit (not for time spent) the physician’s office is pushed to see many patients in short visits – which works well for uncomplicated patients and is a disaster for the rare of complicated patient.

So… if you truly want to benefit the entire system (I know this is not motivating because it is daunting) you would want to get rid of this system by promoting Health Savings Accounts, a change in the tax code so as not to tie one’s insurance to one’s job, a freeing of health insurance companies to offer ANY product they like (not just what some government entity tells them they must offer) – including catastrophic care only, the elimination of the government as a large purchaser of health care (Medicare and Medicaid) since by buying it they greatly control the market, the elimination of the FDA as the controller of medicine (allowing them to dispense advice, but not control the sale of drugs), etc, etc.

Medicine is a massively controlled third-party system with limited freedom – which I think leads to the loss of focus on the patient.

I understand your perspective and that of the PCP. But I’m not talking about a few instances or one locality. The numbers of us (Cushing’s patients in the U.S.) who have been treated the same as I is overwhelming. It’s staggering. Multiply this by the number of other possible patients with other diseases or problems, and the numbers of misdiagnosed or ignored patients are probably huge.

I’m carefully trying to avoid blame with my statements and my blog writings. However, I want a solution and no one seems have one. The PCP’s and specialists each have a side, both pulling in a tug of war, and the patient is left in the mud in the middle. No one seems to actually be doing anything other than talk. Talk is cheap.

I am willing to work proactively with my anger in a positive way rather than blaming someone. Therapeutically and realistically, its the best thing to do. I just don’t know where to start or what to do. I’ve asked the medical blogworld to use the large patient base that is available. I don’t see it happening, but perhaps I’m not looking in the right place.

As for better medicine, I travel across the continent and pay out-of-pocket so I can have it. It’s worth every penny. I just wish I had known enough to do that 20 years ago.

And there is more. If you were mainly evaluated by primary care physicians, your physicians may have been under intense time-pressure and therefore didn’t take the time to listen more carefully and think “outside the box”. For more on this, see “How primary care prevents you from being a real doctor” (http://www.kevinmd.com/blog/2008/11/how-primary-care-prevents-you-from.html)

If you want to get a glimpse of better medicine, investigate MDVIP, SignatureMD and there are others. I am not a member of these organizations, but as a specialist, I often get referred patients from these types of practices. These ‘concierge’ or ‘retainer’ type practices are laughed at for being frilly ’boutique’ practices – but I can tell you from my perspective that they offer the kind of time and attention to detail that might have served you well.

Why can’t all practices be this good? Most of them cannot afford it. Just to keep their practices afloat, they must see 30-40 patients in a day.