Episode 30: What's My Name? Mary Dell, MD (Medical Detective)

Here’s a call out to the then-Snoop Dogg (now "Lion," or was last I heard) for the use of his title—gotta love that tune! http://www.youtube.com/watch?v=wHKEJqMSiDg[Contains “obscene” language.  And while we’re discussing that, here’s a link to George Carlin’s “SevenDirty Words” to loosen you up.]

Okay, if your ears can't handle a little profane reality--here's what I'm really talking about today:  MYSTERY SOLVED, or at least a huge chunk of it, no thanks to the doctor/patient relationship I'm now negotiating with my much-loved primary care physician who, I fear, is burning out on me and on her practice in general.  And who can blame her?  Our health care system is so messed up today with everyone's running a patient's care OTHER than her own doctor--that's backasswards.  If I were a caring physician today, I'd be as burned out as she is.  I could just as easily have included this in my Down the Rabbit Hole series on the madness of today’s health care system as the story starts with more of that madness.  First, I will lay out the facts:

1.  I have had mysterious symptoms and numerous medical diagnoses since I became severely ill in 1996 and my health has declined—sometimes slowly, sometimes precipitously—ever since.

2.  I am a curious person who loves to know.  I love to know about just about anything that crosses my radar screen, which is why I sometimes can’t put my iBrain down.  I’ve been grandfathered in with unlimited Internet, and if a random factoid passes my way that piques my interest (and most do), I absolutely have to know.

3.  I am a scholarly person, a nerd, if you will.  I love doing research.  As a graduate student in English at a state land grant university, I loved the detective hunt represented in gathering research.  Ten floors of periodicals—literary, scientific, educational journals and books—and the code to crack that vault of wisdom—a card catalogue, a computer or online database—and I was like a pig in shit. 

4.  I never sought a career in health care, nor do I have one.  I took a job in a health education center after I earned a Master’s in English because my kids needed me to get a job instead of living the life of a perpetual student and I needed health insurance.  Part Two of that is that I live in Appalachia, and decent jobs are hard to come by.  I wanted to teach college English, but with only a Master’s Degree, my opportunities were limited, so I took the health education job to earn a paycheck.  I didn’t like anything about health care at the time other than how it had helped my family through the years. At that point, my associations with it had been mostly negative, from feeling nauseous while walking into Children’s Hospital National Medical Center with my son whose craniosynostosis necessitated two neurosurgeries in his first year of life and another when he was five—we watched the DC fireworks from his hospital window that year—and every time I walked into the place I could smell that sickly sweet goo they’d stuck all over his head to keep it together after they’d cracked it open and chipped away at his skull.  My strong, all-powerful dad made weak against a hospital pillow after having his colon chopped in two, the bad part taken out, and then sewn back together.  My mother, brother, and me having Thanksgiving dinner in the hospital playroom—nothing is worse than hospital food on Thanksgiving, especially when your dying mother is beside you in the midst of a cheerful children’s playroom.

5.  (I’m trying to be concise, dammit.  Someday I’ll come back and cut—I just have to vomit it all out on first draft and never have time to go back.)  I am a trained medical librarian and have served in that role for several hospitals and educational institutions, either as an employee or on contract with my current employer.

6.  I have a pretty good brain. Okay, I know this sounds like bragging, but I’m using it as a relevant fact to build my case, and I have the proof of it because my mom kept the scores in her “Mary Dell” file:  On standardized Iowa tests given to a good portion of U.S. schoolchildren each year in third grade—or at least did when I was a kid—in Abstract Reasoning I was in the 99th percentile.  That’s right, sports fans.  There IS no 100th percentile—the number is how many of the other participants did worse than I did, so it can’t be 100 percent since I’m part of it.  So I got the highest score possible.  Now, I’m not saying I haven’t lost some of those smarts over the years through stupidity of my own or other environmental factors, but the truth is, I’m pretty good at figuring things out.  Not only that, I have the tools to do so (see nos. 3 and 5, above).

7.  In addition to expert skills in searching PubMed/MEDLINE, the database of all reliable medical literature published every year in English and in many other languages as well, in addition to years of self-education in medical terms, anatomy, and disease both for my job and for the seemingly unending of medical issues that have assaulted my little world, I know how to read and process UpToDate.  What’s that?  Well, in a nutshell, it’s the tool medical students and doctors are using all over the world to quickly locate the research findings on any given medical condition, symptom, procedure, whatever.  “Evidence-based medicine” is the buzz term—let’s hope they always used evidence before treating us, unless they were Nazis or other barbarians—physicians, librarians, and other professionals conduct systematic reviews of the literature on the topic, assign weights to the research based on the validity and robustness of the study, discuss all important findings, and offer recommendations based on this comprehensive review.  Doesn’t take a brain surgeon to read those recommendations and—news flash, docs—even to understand them! 

Okay, so baseline set—

I asked my PCP if she would refer me to a neurologist.  Why?  She asked.  “Well, I read that …”

She cut me off.  “I don’t want to know what you read.  Tell me.”

Okay.  I was going to say that UpToDate included neurological disorders in the differential diagnosis of nearly all my symptoms, but since she cut me off I swallowed my annoyance and gave her a list of symptoms I thought might have a neurological basis.  She reluctantly agreed.  Now, this is a doc who had never hesitated to send me to specialists on her slightest suspicion.  Her disregarding my professional experience—granted, it’s not hers, but as a medical literature researcher and Pretty Smart Person, I brought the advantage of Time to the equation.  I had Time to sift through journal articles and systematic reviews and guidelines for care and, for heaven sakes, to read an UpToDate entry on the symptoms that plagued me.

Thus, I was horrified to see on my referral two letters:  PR.  Patient Request.  I could figure out no other reason for those letters, and I was pissed.

Sure enough, the neurologist, whom I adore by the way and will add to my list of Sexiest Practitioners since even more than endocrinology and hematology, Neurology is THE sexiest health care discipline*—looked at my file and the referral, then crossed his arms, leaned back, and asked me while I was there.

Naturally, I could sense an adversarial situation right off the bat—not the best way to begin a medical relationship with your hoped-for diagnostician.  So, I was honest.  “Well, I’m a medical librarian, and I know that can probably get me in trouble [give them a nibble—maybe some people get in trouble doing medical research, but I feel pretty strongly mine has not been motivated by hysteria or hypochondria but by the fucking desire to get better by using the tools both given me by God and the Universe and learned in my one and only shot at life that I’m sure of] --  Anyway, yada yada yada, appropriate obsequience and humility—

“but I have a lot of strange medical conditions I’ve looked up and UpToDate lists neurological causes for nearly all of them.”

He was still leaning back, still had his arms crossed, but he was listening.  He hadn’t cut me off yet, so I went for it.

“I’ve been doing a lot of research because that’s what I do, and nearly all of my conditions seem to originate in the hypothalamus.  My primary aldosteronism starts there, my hypothyroidism starts there, and I had two abnormal pregnancies—“ (I was going to say, “and I had an abnormal hormone reading early in my first pregnancy, was told I’d probably lose the baby but if I made it three months the danger would be over, made it past the three months but gave birth when the baby was at only 32 weeks when the amniotic sac ruptured early—and the only hormone that could have been is progesterone, which is controlled by the hypothalamus—“

But he’d had enough and had already cut me off.  “So what do you want me to do?”

Maybe he was expecting me to also have a list of the tests and procedures I should now be given, which I certainly could have done, but instead his question surprised me and I just said in an almost pleading way, “I don’t know!  I just want to get better!”

And so he proceeded with a neurological exam, after which he looked at me for a moment and said thoughtfully, “I think . . . . .  No, let’s just wait for the results.”

He’d seen something but didn’t let on what it was.  Don’t you just love these mysteries?  Actually, that was absolutely fine with me.  I’ve had enough speculation from both myself and the health care system to last me several more incarnations.  I’m an amateur scientist.  We can have our hypotheses, but let’s confirm them with data.  Which is all I wanted to do by asking to see the neurologist, and it was a great sign that he was willing to take a look at things.

I just can’t wait to tell him in December when I go back for follow-up after tests he ordered—MRI/MRA of brain; MRI of spinal column; EEG, and blood tests—that I’ve just been diagnosed by my sleep pathologist after a Multiple  Sleep Latency Test showed my average sleep latency is a mere 4 minutes—with narcolepsy.

And guess where narcolepsy originates?  That’s right, sports fans.  Right there in that cute little messed-up hypothalamus.

For now, this is Mary Dell, MD (Medical Detective), signing out.  But thanks to my new meds, I’m not going back to sleep.  Get ready, World, you ain’t seen nuthin’ yet!


*  DISCLAIMER.  Don't worry--I'm not a gold digger after a physician. I'm a settled old lady in my mid-50's who has spent the last nine years (almost) with her dream guy.  We have our issues, but I'm exactly where I want to stay.  You can't blame an old lady for admiring youth and beauty, can you?  I look at men--and women, for that matter--who are that much younger than I am as a sort of new species, one that has no pull on whatever prompts my lust for another person.  Almost invariably (can't remember lusting after a celebrity, even Johnny Depp, in the technical it-makes-me-feel-horny kind of way), for me at least, lust involves up-close and personal contact with someone I'm closer to than these docs who I see for about 20 minutes at a time a few times a year. Admiration and aesthetic appreciation, however, I find for folks wherever I go, whether health care professionals or a street person playing guitar in the subway, especially if he's singing a Beatles tune.