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.

*******

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 midnight cortisol serum

·       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
28 slot machines with 5 wheels and all 140 wheels
landing on Cushing's. Guess what? They did. Lucky me.

·       many Cushing's symptoms (75 wheels for each of my Cushing's symptoms)

·       high urine cortisol (25 wheels for each test)

·       high midnight cortisol serum (25 wheels for each test)

·       high saliva cortisol (7 wheels for each test)

·       high ACTH (4 wheels for each test)

·       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 140 wheels. Think of how much space this would take up in a Vegas casino!). 

So, let’s imagine me going up to have a seat. 

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.

Fighting My Way Out of the Funk

I'm sorry. I haven't been posting here. I realized I didn't want to share any bad news. People don't expect that from me. People really don't want to hear bad news. They have their own problems. In this economy, people are taking a beating in all aspects of their life. I find that the more I keep it all to myself, the better everyone else feels around me. I don't want to be Debbie Downer. Who does?

However, I have realized in the last two weeks that I can't keep it all in anymore. I physically can't keep it in. Emotionally, I can't keep it all in. I miss "telling" my experience to "someone." It really doesn't feel like anyone really listens in my "real" world. I can't blame them. There are far more interesting things to discuss than what my latest ailment entails. While I don't blame them, I have been feeling increasingly sorry for myself. That's unfair, and it is a tremendous load to care alone. So I decided that I will try to put it out "there" so that I don't feel like I am keeping it all pent up inside. Maybe this will help. Something has to. Soon.

It's therapeutic, somehow, to know that someone else may have experienced or might experience what I am going through now. So here it goes. Shorter posts, hopefully helpful, even if just to me.

I hate to blog and run, but I've got to put the baby to sleep. ~Melissa

********************

I am always encouraging people to take charge of their own lives, especially their own healthcare. So for now, I wanted to share a book I just saw mentioned on the Dr. Oz Show from Dr. Lisa Sanders. I'm gonna download it on my Kindle on my iPhone now. Good. Something new to do. I am looking forward to reading this book: Every-Patient-Tells-Story by Dr. Lisa Sanders

Click here to read an excerpt from the book Every-Patient-Tells-Story by Dr. Lisa Sanders

I also found this from the Oprah.com site:
Every-Patient-Tells-Story by Dr. Lisa Sanders

How to Help Your Doctor Help You
By Naomi Barr

Gregory House, MD, the main character of the Fox TV show House, isn't like other TV doctors. While they obsess over emergencies, surgeries, and affairs of the heart, House is all about the subtle art of diagnosis. That's no surprise given the inspiration for the series—the New York Times column "Diagnosis," by Lisa Sanders, MD. In her new book, Every Patient Tells a Story, Sanders uses puzzling medical cases to illustrate how narrative can help you help your doctor. Here, she shares some pointers:

O: How do I know what to tell my doctor?
Sanders: You're telling your story even before you call a physician. You share it with your friends, your mother, your spouse. You tell them about the pain you're feeling—what makes it worse, what makes it better, how it affects your life. Use this info, and then be prepared to answer the questions that doctors ask.

O: What kinds of questions?
Sanders: Actually, the first question is one that I find doctors rarely ask, though they should: "Do you have any idea what this is?" Patients usually do have a sense of what is ailing them. So if your doctor doesn't ask, speak up. I had a patient with fever, low blood pressure, sore throat, and maybe diarrhea. I took a good history and did a thorough physical exam. But 48 hours later, all the tests (Lyme disease, various other bacteria, salmonella, etc.) were negative. As I was giving her the results, she said, "Oh, I think this might be dengue fever because I was just in Puerto Rico visiting relatives and everybody in the neighborhood had dengue and felt just like this." Sure enough, that's what she had. Another important question: "Has anything like this ever happened to you before?" Patients often overlook this. If something strange happen to you once, okay, everybody has one freak occurrence. Twice? That's a pattern.

O: What happens if your doctor doesn't take the time to listen?
Sanders: If your doctor interrupts before you are through, indicate to her you're not done. We have no idea which detail is going to be useful until we hear them all. When you get a chance, say, "I'd really like to go back to my story. I still have some thoughts about what's going on." You are the expert on your experience, and no one but you can describe your area of expertise: your body.