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It’s a scary thing to be denied health insurance – or even a job – due to a health condition. What’s even worse is when our medical records contain diagnoses and even treatments for conditions we do not have, never have had. Not only might we be denied insurance or a job, other doctors may misdiagnose us or prescribe incorrect treatment based on the misinformation in our charts.

How can this happen, you ask?

Doctors constantly have to conform their practices to the dictates of insurance companies. Insurance companies will pay for diagnostic testing and treatments for a disease or condition, or even a symptom – but not to rule out a disease or condition.

Say you’re experiencing persistent tingling in your hands, feet, lips and ears. After a few months of this, you decide it needs to be checked out. Your primary physician detects nothing wrong on examining you – no loss of sensation, no indicators of possible stroke, nothing. She refers you to a neurologist and has you get a CT scan because she knows he’ll want to see it. She puts tingling as the diagnosis, because your symptoms are all she has to go on. No problem there.

The neurologist sees nothing on the CT scan or on examining you but wants you to return for an EMG. He also sends you for an MRI to rule out multiple sclerosis. He puts a diagnosis of MS on the referral and the bill for the office visit, because your (very good) health insurance plan will cover tests for a diagnosis of MS, but not to “rule out MS.”

Off you go. The MRI shows a possible tightening around a nerve, but this would explain tingling on only one side of your body. Since you tingle on both sides, “pinched nerve” isn’t really the correct diagnosis for you. But they’ve ruled out MS, so “pinched nerve” is what they stick on their bill to the health insurance company.

Back you go to the neurologist, who does the EMG expecting, as he tells you beforehand, that you must have carpal tunnel disease because you spend your days working at a computer. That’s what he’s looking for, so that’s what he finds. Never mind the tingling in your feet, earlobes and lips. And so carpal tunnel disease is added to the list of diagnoses on your medical record.

Your health insurance company now thinks you have MS, a pinched nerve and carpal tunnel disease. It’s in their records because of the claims filed for your medical bills. You have none of these. You have a mild tingling.

The mis-recording of diagnoses gets compounded, because the office clerk sees MS and carpal tunnel from the prior visits and puts that on all subsequent referrals and bills. Why should she question it? It came from the doctor, after all. So now you have several instances of MS and carpal tunnel on your record and in your medical claims history.

Imagine if you needed to apply for a private, individual health insurance plan. How easy would it be to get coverage with a diagnosis of MS?

Knowing the neurologist had tunnel vision about carpal tunnel disease, you move on to another neurologist, who confirms there’s no evidence of carpal tunnel or MS. At this point, he does detect some mild loss of temperature sensation, but cannot come up with a firm diagnosis and so uses “peripheral neuropathy” as his diagnosis. All “peripheral neuropathy” basically means is that there’s something odd going on with your sense of touch. It’s a catch-all term that your symptoms fit into. It’s not as good as a diagnosis of a disease, because it suggests no treatment plan or prognosis. Insurance companies will cover testing for it, however.

It’s better than a lot of incorrect diagnoses on your medical record, because at least it’s accurate.

So what can be done? Well, it would make sense for insurance companies to just accept “rule out” diagnosis codes and to pay for charges incurred for them. After all, the whole point of diagnostic testing is to find out what the problem is, and that very often involves ruling out certain possibilities. Another solution is for doctors, labs, etc. to just use the diagnosis codes for the symptoms the patient is reporting. In this case, “tingling” could be used, as the primary physician wrote. Or the physician can pick a generalized descriptive diagnosis like “peripheral neuropathy,” as the second neurologist did.

Unfortunately, we patients cannot count on our medical providers to do this. We have to look at what’s on our bills and in our records. Most of us don’t know what the diagnosis codes mean – what is 340? 270.0? 789.3? – though it has become easier to find them. Of course, very often these days we slip a credit card to the receptionist and walk out with a receipt for the co-pay rather than the itemized office visit receipt we used to get to send to the insurance company. We need to ask for the itemized bill showing procedures and diagnosis.

Technology helps, because both procedure (CPT4) and diagnosis (ICD9) code translators are now on the Internet. With EHRs (electronic health records, the patient’s medical records) becoming more available, we won’t need to request the itemized bills any more; we’ll be able to see all the details right in our records. If we find an incorrect diagnosis, we can then insist that we want it corrected.
We need to be diligent about this if we don’t want incorrect medical information to result in denials of coverage (or jobs) or in causing our physicians to miss a diagnosis or give the wrong treatment.