Wednesday, July 18, 2012

Gambling on a Cushing's Diagnosis: What are the Odds?

A Cushing’s friend of mine recently asked what we can say to our doctors to explain why we think we have Cushing’s. The Cushing’s community knows that the burden of proof falls on our shoulders to prove we have Cushing’s to a doctor, before tests are run and even after positive tests confirm it.  These doctors play judge and we Cushing’s patients must prove beyond a reasonable doubt that we have Cushing’s, often in the hostile setting of doctor’s office after doctor’s office. Seems harsh? Seems unfair?

Doctors are taught in medical school that they are unlikely to see a case of Cushing’s in their entire medical careers.  In fact, doctors admit that Cushing's may be the most difficult diagnosis to make in all of medicine. Sigh. So we walk in, prepared as our Cushie friends have recommended and armed with symptoms list, photo summary, and past lab results. Doctors are still incredibly dismissive and cruel. They blame the patient for their weight gain, regardless of exercise or dietary habits. They routinely dismiss all points the patient makes.  Many doctors eagerly counter every point and spout facts that are incorrect according to published medical literature.

So what are we supposed to do? Give up? No. We keep fighting no matter what.

To that end, I wanted to share the argument I have used for a long time on several occasions. In fact, I just used this during my appointment with a new neurosurgeon this past Friday.

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In statistics, we learn the concept of
probability. Probability is the chance that something will happen - how likely it is that some event will happen.  With each variable added, we decrease the probability that each one of those things can occur together at the same time. 

Think of the elusive, rare Cushing's diagnosis as a slot machine with 7 wheels. Each wheel is labeled with nice fruit images and contains one of the following: 

·       all Cushing's symptoms
·       high urine cortisol
·       high saliva cortisol
·       high ACTH
·       positive IPSS
·       MRI showing pituitary tumor

Now spin the wheel.  For a Cushing’s diagnosis, each wheel must land on the diagnostic criteria for Cushing’s listed above.

What is the likelihood that all of those things are going to "hit" and line up for the jackpot?
It is not probable. In fact, the odds are stacked against you to have all those things line up like they do. For us Cushing's patients, THEY DO LINE UP. WE DO HAVE ALL THOSE THINGS CONFIRMING CUSHING'S. It is a RARE occurrence, and it doesn't happen often, but people do spin the wheels on a slot machine and line up all the wheels to win. For us, of course, Cushing's is a HUGE loss -- no win at all.

Now, let’s take a gander at what the diagnosing slot machine would have to look like for me to get my Cushing’s diagnosis, since my doctors require multiple high test results in each of the testing categories.
To confirm my Cushing's diagnosis, it would take
23 slot machines with 3 wheels each all landing on
Cushing's.  Guess what? They did. Lucky me.

·       many Cushing's symptoms (20 wheels, since I have at least 20 symptoms)
·       high urine cortisol (15 wheels, since I have had at least 15 high test results in this category)
·       high midnight cortisol serum (20 wheels)
·       high saliva cortisol (7 wheels)
·       high ACTH (4 wheels)
·       positive IPSS (1 wheel)
·       multiple MRIs showing pituitary tumor (3 wheels)

Now then, based on my lab values in each category, for my diagnosis, we have built a slot machine with 70 wheels. So, let’s imagine me going up to have a seat at this mainframe-sized slot machine with its 70 wheels. 

I pull the arm.
I spin the wheel.
One by one, each wheel lands on the picture showing CUSHING’S.

My Cushing’s diagnosis is confirmed. It is rare, but it is not impossible. Yet, doctors still argue and berate the patient.  You can see why I have very little tolerance for someone who calls my diagnosis, or any Cushie’s diagnosis, into question. It is ludicrous, unfathomable, and unconscionable for any medical professional to doubt us, due to their ignorance, pre-conceived notions, lack of medical curiosity, or their tight schedule that prevents them from listening to us and really understanding our whole history. The way doctors treat Cushing’s patients should be illegal.

My first neurosurgeon told me that in medical school, doctors are taught to find the one disease that explains everything and to not accept many "little" diagnoses strung together. It was imperative to find the diagnosis that captures as many of the symptoms as possible.  I implore the medical community to remember that lesson and do more to help their patients.

There is no doubt why we Cushing’s patients are the determined lot we are. We know our own bodies. It is our unrelenting pursuit for the truth, our unwillingness to give up on ourselves, and our ability to learn about our disease from those who face its challenges every day that enable us to fit all the puzzle-piece-diagnoses together in search for our cure.  

That's why I look at *all* of my friends as Cushie warriors.