The 5% Club

The 95/5 rule of Diagnoses

A number of years ago, I sat in a doctor’s office with one of my children. He was giving me a bemused look, as he perused the myriad of paperwork we had collected on her over the past months. No one knew exactly how to proceed. She wasn’t growing; she didn’t really eat. She was pale, with dark circles under her eyes, but no pain, no other symptoms.

He looked at me at said, “Your daughter is an interesting case. Most people, I’d say 95%, when they walk in my office I know within two minutes what their diagnosis is. Then there’s the 5%, and that’s the group your daughter falls into.  The group that we just don’t know, that’s not straightforward.”

Oh great, I thought. Interesting and not straightforward, just what a parent wants in their child’s medical situation. Fast forward 7 years, we now have a diagnosis of celiac disease, and my daughter no longer visits doctors’ offices like playdates. But from my work over the years with a vast array of clients, as well as my own experiences, I know what it is like when you join the 5% club.

The Undiagnosed Minority

Often, I hear people’s frustration when they feel like the doctor takes one look at them and prescribes a medication or a treatment plan. ‘But he barely spoke to me and then just handed me the papers.’ Bedside manner notwithstanding, many illnesses and symptomology are quite clear. Protocol about what to do with a child with a fever who doesn’t exhibit signs of infection is quite specific. A quick doctor’s visit does not equal negligence.  Most of the time, it equals knowledge, efficiency, and clarity.

However, for the times when the doctor needs to review the information in front of her, think, and perhaps consult, then we often feel the most frustration. Case in point: my niece was rushed to the ER a few years ago for severe abdominal pain. Everyone was sure it was acute appendicitis. The acute pain, however, turned into chronic pain, which created a week-long hospital stay, several imaging tests, and physicians who, in a sense, threw up in their hands in uncertainty. It took a year to reach a physician, who calmly sat for 45 minutes with all the medical information (despite the repeated knocks on the door and the dirty looks of waiting patients), said “I don’t know, but here’s what we’re going to do,” and created a step by step treatment plan that including pain alleviation, ruling out less common possible diagnoses and trying to come to a conclusion.

Abdominal pain in adolescents is one large gray area of the undiagnosed minority. Functional Abdominal Pain Syndrome is a diagnosis with its own set of criteria, which is seen clinically and has a specific treatment plan. Non specified Lower Back Pain (see my blog on that) is a huge area of undiagnosis, where patients flit from family physician to orthopedist to neurologist to pain specialist and back to family doctor, with no treatment plan in sight.

How can we identify this hidden 5%?

  1. Have you been referred to multiple specialists about the same problem in a short time period (over a few months)?
  2. Have you been told at the end of the visit, “you really need to see an X specialist”?
  3. Have you left the doctor’s office feeling like you still don’t know what’s wrong with you?

These are signs that you may be one of the undiagnosed, and your job as your own case manager just got a bit tougher.  However, there are things that you can do to help the situation.

  1. Prepare a summary of your specific health issue, including relevant facts, blood tests, imaging results, and hospitalizations. This exercise is also for you, as a patient, to perhaps see relevant information that you may not have seen before. I often see that when people get to the doctor, they tend to ramble a bit, and may start off their story, with ‘well, I banged my knee real bad, which brought me to the ER…’ when their situation is really about unresolved abdominal pain, and the knee injury is a side issue.
  2. Get a summary letter from every doctor you see, even if they didn’t give you a prescription or referral. You don’t always understand what the doctor is checking for or analyzing. It could be that the quick physical exam the neurologist gave you was actually checking reflexes and this summary information is important for the next specialist to understand. Perhaps you forgot that the orthopedist had actually sent you for an ultrasound two months ago. This way, the chain of information from specialist to specialist is maintained.
  3. Remember, there is no magic bullet. When we are in pain and/or not able to function, we want to get better. Now. That is reasonable. However, when you join the 5 percent club, you almost never get ultimate resolution.   Yesterday, I heard about a new clinic in the center of the country that is healing fibromyalgia patients with bioenergetic stones. They have testimonials saying that clients’ pain was reduced almost to nothing. I want to believe this because I have many clients, and friends, who suffer from this illness, and complete relief would be great. However, rarely do I see full relief from one type of treatment in this minority group. It is usually a combination of therapies, self-help, and lifestyle modification that works in these cases.

Often the issue disappears as mysteriously as it comes. I have a friend with a daughter, who for some unknown reason would get these fevers with huge spikes in her white blood cell counts. They eventually determined it was some kind of infection, but they didn’t really know how to treat it. After a year of testing, steroids, hospitalizations, these bouts have tapered off and they have accepted that they don’t know what it was, and they will just go on with their lives. No more testing, or seeking third and fourth opinions. Physicians know this, that many issues resolve on their own over time, and that is why they are reluctant to do invasive testing, especially in children.

Yet doctors are fully aware of this club, in fact, there is a name for it: Medically Unexplained Physical Symptoms (MUPS), and they realize that it causes patient distress. It seems that these symptoms occur most often in the following areas: musculoskeletal pain, fibromyalgia, headaches, fatigue, gastrointestinal issues, breathlessness, chest tightness/palpitations, insomnia, environmental sensitivities, and tinnitus, mostly in adults. However, as we know, it does occur in other age groups and medical areas as well. It is an area that is being researched, mostly in the area of doctor/patient communication and how best to treat these patients.

My own daughter got her diagnosis of celiac, but that isn’t to say that the growth issue was resolved. Many symptoms remain a mystery.  They may for you as well.

This is the delicate balance of the 5% club, when to push forward and when to stay in place and accept the mystery.

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