Not All Rheumatologists Are Created Equal

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In the field of medicine, specialists are deemed to be experts within their field. As a nurse I learned to expect that the specialists I worked with pretty much agreed with one another that xyz set of symptoms meant the patient had abc disease and there was a 123 treatment plan. When a particular specialist had a day off and one of their colleagues were covering I had no doubt that the treatment plan outlined by the patient’s specialist would be the same treatment plan that the covering specialist would agree with and follow. Patients with serious illness would often ask for a second opinion and might end up preferring one specialists bedside manner over another, but little differed in the actual treatment most of the time. The exception being a rare disease where there may not be a proven treatment plan.

I’m in my fourth year of autoimmune illness. In this time I’ve seen three rheumatologists. Each of them had a difference of opinion on my diagnoses and my treatment plan.  I’ve never experienced such varying medical opinions before in my nursing career!  Not all rheumatologists are created equal.  Rheumatology is a specialty field where there is a huge gray zone which leaves a lot of room for interpretation by the physician. The doctor can’t just look at one thing like a blood test or a xray and say, “Yes, you have rheumatoid arthritis”. A rheumatologist has to look at a multitude of factors, many of which can’t be measured by medical science. The doctor has to be willing to look at the whole and not a part.

Currently, in the field of rheumatology, about 20-30% of patients diagnosed with RA test negative for the Rheumatoid Factor and are considered “sero-negative”per the Arthritis Association. For years the presence on the rheumatoid factor on lab results was the definitive piece of the puzzle that confirmed you have RA, but current data shows that some people who test positive actual do not have RA.  Even x-rays alone are not enough data for a physician to arrive at a diagnosis of RA unless you already have bone deformities. In fact, in the early stages of rheumatoid disease, the radiologist reading a routine x-ray may mis-classify changes seen as osteoarthritis. To diagnosis a patient correctly with Rheumatoid Arthritis, it takes a doctor who is willing to spend the time on those initial appointments to collect your medical history, conduct a thorough medical examination and listen to what you are saying. In the current medical climate of booking multiple appointments in a time slot and not taking the detailed time it takes for diagnosis, many patients are misdiagnosed.

My best advice to anyone seeking a rheumatologist for the is to do your homework. Check to see if the physician is board certified in rheumatology. Most rheumatologists are internal medicine physicians with a sub-specialty of rheumatology. To be board certified they have to meet certain clinical guidelines of number of hours trained in rheumatology and they must pass the rheumatology examination. If they are a fellow of the American College of Rheumatology that means that they have paid membership to seek training and keep up with new developments in the field with others of the same specialty, but is not the same as being board certified. You can also call your state medical licensing board to ask if your physicians medical license is in good standing which may reveal if your physician has lost a malpractice suit, has restrictions on his/her license, or any disciplinary action. You can also check online sources such as vitals.com or healthgrades.com to see how patients rate the physician. In addition, be prepared for your appointment with a list of your current medication, a list of your current physicians and their demographic information, a list of your medical history that includes your allergies, surgical history, history of hospitalizations. Most of all, if you don’t feel the diagnosis you have been given feels right or you feel uncertain about the treatment plan or the physicians doesn’t listen to you or makes your feel they don’t have time for you please seek out another rheumatologist for a different patient/doctor relationship fit or a different opinion.

I’m currently seeking out my 4th rheumatologist. It is taxing but I’m paying for medical care and I deserve to make sure I have a physician who is interested in me, has time for me, and listens in addition to proving to me that they are a good clinician. As a nurse, I never understood patients who stayed with a doctor they didn’t like or felt dismissed them. In trying to advocate for patients, I came up with a great analogy that brings home the point that medical care is a service you pay for. I would ask my patient, “If you had a car that kept breaking down after taking it to your mechanic several times and that mechanic wouldn’t listen to you and kept charging you for services, would you keep taking your car to that mechanic?” The answer was usually a resounding, “no” and I’d point out then why do you value your car more than your body? Doctors are human and they are occasionally wrong. Don’t be afraid to exercise your patient rights and hire a physician that is qualified, with whom you have a rapport, and most importantly is someone you can trust.

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2 responses »

  1. Great post, Mischelle. I think a lot of us just get so bogged down because we have so many doctors appts and we get tired. Your analogy makes a lot of sense!

  2. Pingback: How to Find the Right Rheumatologist to Treat Your RA

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