LUPUS IN THE NEWS

Study Reveals Shockingly High Rates of Incorrect Lupus Diagnosis

In a recent report published by the Lupus Foundation of America (LFA), the American College of Rheumatology (ACR) convened at the American College of Rheumatology (ACR) Annual Scientific Meeting in San Diego, on November 3-8, 2017.  One of the many studies presented involved an LFA study of over 3,000 adults with lupus, which found that 46.5% reported being misdiagnosed with something other than lupus at the start of their search for answers to their symptoms.  In addition, over half (54.1 %) were told that "there was nothing wrong with them or that their symptoms were psychological."

According to the study, nearly 40% of those with lupus waited over 1 year from onset of symptoms to receive an accurate diagnosis.  This is in contrast to a previous study that showed it took almost 6 years from onset of symptoms to obtain an accurate diagnosis.  According to the LFA, these findings highlight the importance of continuing to provide medical education to primary and specialty health care providers about lupus symptoms.  There is an urgent need to shorten the time frame for obtaining an accurate diagnosis so that treatment can begin and reduce damage to vital organs; such as kidneys, heart, lungs and brain.  Damage caused by lupus increases the likelihood of developing long-term health complications, making early diagnosis crucial for people with lupus.

According to R. Paola Daly, Director of Research at the Lupus Foundation of America, "The results of this study will help us understand and in-turn, prevent the specific factors that lead to unacceptable delays in receiving a lupus diagnosis."  Also, as a result of this study, the LFA is seeking to identify the barriers that impede lupus diagnosis and ways to improve its accuracy.

Deja Vu

I don't know about you, but when I read this article I wasn't exactly shocked.  I thought, finally something is going to be done about it.  I recall how long it took for my diagnosis (over 2 years) and how many doctors and specialists I had to go through just to get it.  If I hadn't been persistent in my quest for answers, who knows how long it would've taken, causing untold damage to my organs. 

If you're like many of the lupus patients I've met over the years, at least one or more of the specialists you saw commented that your symptoms were all psychological; followed by, a suggestion you make an appointment with a psychiatrist.  As if just because you're a female complaining about generalized joint pain and unspecified muscle aches you must be making it up. Or because you don't "look sick" or your blood tests "appear within normal ranges" the only possible conclusion is not to believe the patient. 

In my experience, it was August, 2000, I'd just been told by my primary care physician (PCP) that she suspected lupus and or some other undiagnosed rheumatological disorder.  At this point in time, my ANA results were positive, along with the physical symptoms, and she referred me to a rheumatologist for further diagnosis and proper treatment.  My health insurance plan was a HMO at that time and I only had one choice for a rheumatologist.  After waiting over 3 months, I finally got an appointment.  The doctor spent about 15 minutes with me going over my history, blood test results and referral from my PCP.  I recall being very anxious to hear how we were going to proceed with treatment and how it would impact my law enforcement career.  I had a million questions.  Instead, the doctor looked at me with a very contrite smile and proceeded to tell me I didn't have lupus, nor any other disease, and all I needed to do was, "work out more".  I was mortified and shocked into silence, I didn't know what to say.  I was 36 years old, in peak physical condition, worked out 7 days a week, had a very physically demanding job on the FBI's Bank Robbery Squad, and was intelligent enough to know when there was something wrong with my body.

I returned to my PCP to discuss what the hell had just happened.  She proceeded to tell me that as long as I had a HMO plan that I would never receive the proper diagnosis and treatment for lupus.  She encouraged me to change my health care plan to a PPO and provided a few recommendations of rheumatologists in the San Diego area.  She'd continue to treat me and provide whatever support I needed.  I'll never forget thinking what a caring and amazing physician she is, going above and beyond to see that I receive proper treatment.  And what was wrong with the other guy, the rheumatologist that said I needed to "work out more"?  It seemed so transparent to me at the time, the potential cost of treatment was dictating whether or not he gave me a lupus diagnosis. Whatever happened to do no harm?  I was angry, frustrated and a few other expletives on how a medical professional of his training in the rheumatology specialty could allow him to treat a patient with such complete indifference.  His disregard for my health and the corresponding implications of not providing the lupus diagnosis and subsequent treatment plan was beyond my comprehension.

LESSON LEARNED

Ultimately, I found an excellent rheumatologist at Scripps Clinic, in San Diego; where, I received a diagnosis of lupus, fibromyalgia, costochondritis, interstitial cystitis, Raynaud's and Sjogrens.  There were a few other diagnoses added later on that I'll discuss in future blog posts; but, these were the foundation for my ongoing treatment plan. 

If you don't believe you're receiving the proper care from your medical professional team then keep searching for answers until you get them.  Gone are the days when you do whatever the doctor tells you to do; without question.  The responsibility has shifted to our shoulders to take charge of our own health care treatment plan.  I don't mean to imply you ignore the doctors advice, but if you don't feel you're being treated properly or the doctor isn't listening to your concerns, then you should pursue other options.

If I can pass on any advice, it would be to listen to your body and trust your instincts.  I knew something was wrong.  I didn't know what, but knew there was something very wrong.  It's not normal for a healthy, athletic young woman to have wide-spread arthritis in her mid 30's, or to have excruciating hand pain to the point she can't reload her Glock!