Readers of fiction will recognize the allusion to Watership Down in this episode's title. Watership Down, a popular book when I was in high school, is based on a completely absurd construct: A warren of bunny rabbits must fight to save its society from nasty Nazi rabbits. Believe it or not, it's a terrific read. It works. Which is more than I can say for the rabbit hole I currently find myself in.In fact, this rabbit hole suffices as a metaphor for the utter irrationality in today's health care system. I've actually encountered Alice's Red Queen; I don't want to call her a Nazi, exactly. Or mix my allegories. Just couldn't resist the literary tie-in.
Okay, okay, enough with the figurative language. Here's what happened, Dear Viewers, when I finally underwent the long-awaited neuromuscular examination for possible myotonic dystrophy at Johns Hopkins Medical Center. Now, to date, I've been more than pleased with my care at Hopkins, but this experience has likely destroyed my loyalty to said institution.
They'll be happy to be well rid of me anyway. Who am I but one patient, powerless against the juggernaut of Big Medicine, Inc.? One patient jacking up their costs (and their profits) with her smorgasbord of chronic disease. And now that I have Medicaid instead of Blue Cross Blue Shield, I'm doubly unimportant to the system created (but not maintained) to help me and you.
I'm a shareholder liability, that's all I am. "Let them die then, and decrease the surplus population!" Okay, okay, not yet another literary character entering this story, but I often quote Ebeneezer Scrooge at moments like this.
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| "Off with your head!" says Dr. Red Queen, in so many words. "And no DNA test for you--you've overstepped yourself so I don't care to relieve your mind with an easy yes-or-no answer to an at least somewhat possible reason for your years of suffering and confusion at the ways your health has failed you! So there!" That's her reflex hammer in her hand, and she refuses to admit the medical sign it renders in her patient, lest her patient be right about something she has no business knowing about! Off with her head, and no DNA test for her . . . NEXT! I have a paycheck to collect and a lifestyle to protect and a reputation that trumps yours, so nyiehaya! |
The electromyography (EMG)--a rather uncomfortable test in which a doctor sticks needles into your muscles and records the electrical reactions--indeed revealed some myotonic abnormalities. Thus, although Dr. RQ, as I'll call her, refuses to consider my experience as valid, the machine doesn't lie. This is not over yet.
My true purpose in telling my story is that I want you, Dear Viewer, to understand how the medical system is against YOU, the patient, and how LITTLE YOU MATTER in any quest to learn what is wrong with you or a loved one. Obviously, this needs to change.
The medical system exists to serve US--YOU and ME, the patients. We, the People. But as this diagnostic nightmare continues to demonstrate, we count very, very little in the stories of our own lives, if we believe what our doctors and other health professionals, insurers, and governments (federal, state, local) tell us.
But we don't have to believe them. We know our bodies; we can read; we can think; we have friends and family who want to know what is wrong; we have only this one life to live, and we deserve to know what is wrong when there is something wrong. That's what the system is for, but the system too frequently fails us.
To make this as concise as possible (Lord knows that's hardly possible for me these days--and I've already failed on that point anyway!), I will simply recreate the scene as accurately as I can, and I promise I am not exaggerating any of this. I'll follow up, of course, with the continuing saga, and my thoughts on it.
I'd be very interested in YOUR thoughts on it, too, Dear Viewer, so please send me a comment if you have experienced anything similar or have any other thoughts about this and/or, best of all, ways to cope with this and help PCPs understand how to respectfully and productively deal with patients. I'm hoping to compile those stories, so let me know if you're willing to have yours published on the Web site--you don't have to use your real name I'm working on--Patients Empowering Patients, or PEP. (Clever, ain't I?)
July 9. Neuromuscular Consultation for Possible Myotonic Dystrophy with Dr. RQ, Neuromuscular Specialist at Johns Hopkins Medical Center
An Absurdist Play (Actually, An Absurdist Truth) in Three Acts
Prologue
Setting: An examination room at Johns Hopkins Medical Center, Baltimore, Maryland.
I meet with fellow (or junior doctor) to go over my medical history. I'll call her Dr. J, for "Junior." I probably make a mistake right off the bat when I respond to her first questions.
Dr. J reads me, the digital patient, on the computer screen and then turns to me, the human being.
Dr. J: So, you were referred here by Dr. A because you've been having some neurological issues, such as vertigo and some neuropathy, is that right?
This throws me off from the start. I haven't been having much vertigo of late (though I still frequently get dizzy when getting up from the couch or bed too fast, and sometimes just because I got up, but I don't think that's vertigo, exactly). The vertigo happened a few times a couple of years ago and was the reason I asked my PCP for a referral to a neurologist in the first place, though, truth be told, my main concern was that my autonomic system was failing, but when I told her that, she wanted something more concrete.
And I didn't lie. The vertigo had happened a couple of times--it was as if the world had just tilted on its axis and I had stayed put. As it is, she'd put "PR" in big letters on my referral, which I saw in my file, and I can only surmise this means "Patient Request."
My first moments with the saintly Dr. A back home, before THIS consultation was even known to be needed, were tense because of this referral, but he is such a good judge of people (he was named the area hospital's best physician this year) that he quickly realized I wasn't just whistling Dixie and took me seriously from that point forward.
PCP ("primary care provider"), by the way, is medspeak for physician or other primary health care provider such as nurse practitioner or physician assistant, categories of caregivers few patients realize mean different things for insurance companies and licensing regulations, let alone the patient, though I'm in favor of physician assistants for routine health care.
It's pretty much a crap shoot whether you get someone who is going to help you, and it doesn't necessarily depend on the rank, i.e., physican, NP, or PA. The MOST important skill in taking care of patients is the ability to elicit the best history and description of their symptoms. Without that, anything a caregiver does is guesswork. But so few do that nowadays, I can tell you from firsthand experience.
We haven't even mentioned hospitalists yet, one of the worst trends--and a hot one, believe me--to have hit health care in a long time even in the midst of so many bad trends, but that's another episode.
Me: [Rattled, but trying to just be me and tell her why I'm here from my OWN perspective, since I'd have been perfectly happy staying right at home with Dr. A with those particular symptoms, but because he didn't feel comfortable delving into myotonic dystrophy--which wasn't his specialty--he wanted to send me on to the so-called expert, I smile and say ...] Well, yes, those were issues for me but I really felt I needed to see a neurologist to see whether I might have myotonic dystrophy.
I see right away that this doesn't sit well with Dr. J, perhaps because I used the pronoun "I" rather than the name "Dr. A.," and who the hell am I to talk about something like myotonic dystrophy anyway.
Thus, I do take some responsibility for how badly things got screwed up, but I still contend that Dr. RQ's subsequent interactions with me were inappropriate and bordering on malpractice.
Admittedly, I should have played the game, rather than respond as someone who has done her research and is there in good faith, hoping for an explanation for her poor--and decreasing--quality of life. I'm 50+ years old--I should know my role by now: Play the game; Be a good little patient; Act stupid; Let the Big Doctor figure everything out--IF you're damned lucky, which I haven't been more times than I care to count in the roulette wheel of today's healthcare system.
It began when my son was an infant and his pediatrician told me my concerns about his clutching his left hand to his chest constantly and the unusual shape of his head were silly. Again, I do not exaggerate his words, as they are burned into my brain from the electric shock they gave me:
"Oh, don't worry. He's just a right-handed baby with a funny-looking head." In his defense, he was probably trying to be light, to put me at ease and suggest that these concerns would get worked out as he grew--Dr. Spock, the Man Himself, wrote that babies often have heads that are out of proportion to their bodies in their first year, which had mollified me for a month or so after reading it, until someone at the cult I was then attending pulled my husband and I aside and said members of the congregation were worried that our cherub might have water on the brain, which he didn't--but he had something else.
I was only twenty at the time, but the doctor's words didn't sit right with me--mostly because I didn't believe any baby would hold one hand against his chest while diving for a toy with his other, and it didn't sit right with my mom and dad, either. I asked the pediatrician, on their advice, for a consult at Children's Hospital Medical Center, and he balked but agreed to do it against his advice.
When the first Children's neurologist looked at Jason for about five seconds, he told me he knew what was wrong and took out a book and pointed to a head that looked exactly like my six-month-old baby's. Craniosynostosis with closure of the sagittal suture.
That good doctor examined my baby, holding out toys to him that the most wonderful baby in the world until a few years later when a second one equally as wonderful, his younger brother, entered the world, gleefully reached for--with his right hand. His left remained glued to his little chest.
The doctor kindly told me that this was a sign of neurological damage, a very common thing in preemies. Jason was born at 32 weeks, a two full months early, due my water breaking while calmly watching TV and other signs and symptoms commonly found in pregnancies of women with mytonic dystrophy, one of the many reasons the diagnosis seemed plausible after I'd read several medical articles on the condition.
Only I know my medical history that intimately, and my wonderful obstetrician, Dr. Townsend, has been dead for many years, and how the heck would anyone I see nowadays know anything about that if I didn't tell them, and nobody asks a fifty-something woman about her reproductive history.
Since the first words out of my mouth so obviously put off Dr. J, I suppose I shouldn't be totally surprised by what ensued.
Dr. J did ask a lot of questions, and I dutifully answered, but I just couldn't shake the feeling that because I'd admitted that I was the one, and not Dr. A, who'd come up with myotonic dystrophy (though Dr. A, that wonderful man, most definitely diagnosed me with a progressive neuromuscular disorder, something that so little surprised me that I was surprised and touched when he looked at me in the eyes and said, "I'm very sorry to have to tell you this."
I keep Dr. A in stitches. How many patients can say that? And he responds with human kindness, competence, and humor, too.
Dr. J also does a brief neurological exam. When she checks my right knee (patellar) reflexes, my leg pops way up. The left one does, too, though not quite as much.
Dr. J: Wow! I should bring in some medical students to see this!
Me: You should have seen it when Dr. A [my local neurologist] did it. My leg went crazy, swinging back and forth, and even my other leg popped up!
Dr. J: Okay, I'm just to go over these notes with Dr. RQ, and we'll be back in. It'll take a few minutes.
I wait, eager to meet the physician I'm hoping will help me get to the bottom of all this at last. She strides in and holds out her hand. I assume that Dr. J has gone over my somewhat lengthy description (you know me) of my exhaustion on slight exertion/shortness of breath, weakness, hypersomnia, pregnancy problems, and other signs and symptoms of myotonic dystrophy. Silly, silly me.
Act One
Scene One: Setting: Same examination room, with the addition of the neuromuscular specialist I came to see.
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| In case you forgot what she looks like. |
Dr. RQ: So, you have photographs of family members you believe might suggest myotonic dystrophy. Did you bring any of these with you?
Me: No; I forgot them. I can email them to you. My father, I think, looks like the poster child for myotonic dystrophy.
Dr. RQ: Why?
Me: He was bald in his early 20s, had a long, thin face with hollow temples. He looks a lot like the photo of a patient with myotonic dystrophy on the Foundation's site.
Dr. RQ: [Looking dubious.] Okay, so, other than that, tell me why you're here. Why do you think you have myotonic dystrophy?
Me: Well, probably the hypersomnolence.
Dr. RQ: [With face screwed into an incredulous/contemptuous expression]: That's odd. My myotonic dystrophy patients usually answer that question with examples of their muscle weakness.
[NB: This line of questioning is in direct opposition to a simple tenet, published in the Merck Manual: "The history is the most important part of the neurologic evaluation. Patients should be put at ease and allowed to tell their story in their own words."]
Me: [Knowing I'm now screwed, because she obviously has already decided, most erroneously, that I am playing games]: Well, I'm a medical librarian, and I realize that can be dangerous--
Dr. RQ: [Enthusiastically and slightly, or maybe not so slightly, derisively] YES, yes, it can.
Me: [Trying to demonstrate that the connections among neuromuscular disease, hypersomnolence, and myotonic dystrophy are very easy to ascertain, even without more than a decade of researching literature on medical conditions for health professionals] Anyway, after Dr. A diagnosed me with periventricular white matter lesions, I just googled that and "hypersomnolence," and all the results were all about myotonic dystrophy.
[Dr. RQ's expression reveals, I believe, what she thinks of medical librarians and the extent of our knowledge. She is a very expressive woman, not necessarily a good trait in a physician speaking with her new patient when so much of what she expresses is disdain and derision.]
[What I didn't say was that I'd already narrowed down my condition to something neuromuscular based on my extensive history of systemic abnormalities--since a different specialist sees me for each one and my PCP has to take care of too many complicated patients, no one had put the whole picture together. Gone are the days when a physician sat down and researched the Index Medicus for possible diagnoses and treatments for their patients--they just click onto UpToDate and read the cookie cutter.
UpToDate, by the way, is a database of signs, symptoms, and systematic reviews--reviews of the medical literature reviewed with systematic criteria such as weighting reports of random clinical trials higher than personal accounts, say. Obviously, that "statistics rule" point of view is prevalent in the medical profession, hence the need for we zebras to be let out of the horse stable.
I'm actually an UpToDate fan as a starting point, however, and Dr. RQ most definitely didn't follow the myotonic dystrophy systematic review's guidelines on whether or not to give a patient a DNA test. I have more than enough of the signs and symptoms to warrant same.]
Me, continued: But, Dr. RQ, I do have muscle weakness. I can't do anything without being utterly exhausted. I told Dr. J all about that. [I begin describing some of these examples of weakness, but Dr. RQ's demeanor indicated she wasn't interested in or didn't believe what I was saying.]
Act One, Scene 2: Neuromuscular Examination. Same setting. Same characters. Same bullshit.
Dr. RQ begins her neuromuscular examination and continues asking me questions--and conveying her suspicions about my motives for being there. She is skeptical and condescending toward me when I try to share my experiences, which makes it difficult, in fact, for me to SHARE those experiences.
Dr. J sits at the computer and enters findings into it--into my Electronic Health Record, that is, which clearly is far more important than the human patient before them.
Dr. RQ spends some time percussing my left thumb, which jerks into my palm and then lies there like a dead fish after being hit by her little hammer. This, I know from my research, is a classic sign of myotonia [will get citation].
After repeating the move a few times, she discounts it and tells Dr. J not to enter anything abnormal into the record.
Another classic test for myotonia is assessing the patient's grip after a firm handshake. Myotonia may cause the patient's hand to stay gripped after the handshake ends. Mine did not. However, Dr. RQ shook my hand once, possibly twice. According to [will cite], the handshake should be repeated several times, and the patient's increasing weakness and/or tightness noted.
This was NOT done, and I know without a doubt that my hands and fingers are very weak and frequently tight. They ache to high heaven many, many nights, and I regularly drop things because my fingers and hands don't grip things properly. I can barely open jar lids and do other things with my hands and fingers I used to do with ease. [See episode on lack of sex--JUST KIDDING.]
My leg again jumps when Dr. RQ bangs just below my knee with her hammer, and Dr. J again expresses her surprise at how very brisk my reflexes are.
"I'd just put down a 3," Dr. RQ says to Dr. J for recording in the computer. "They're brisk, but there's no clonus."
In English, here's a quick rundown of what it means when a health professional knocks you in the knee with a hammer. The test is of Deep Tendon Reflexes (DTR), and your response is graded by the doctor on a scale of 0 to 4, with 0 meaning the reflexes are absent, 1+ is barely present, 2+ is normal, 3+ is brisk but without clonus, and 4+ is brisk with clonus. Clonus is "alternate involuntary muscular contraction and relaxation in rapid succession" (Atlas of Adult Physical Diagnosis, published by Wolters Kluwer Health).
Clonus, in other words, is exactly what happened when Dr. A had tested those reflexes--something I'd never experienced before, and it had shocked me to high heaven when my leg went so crazy. I guess Dr. A is a little better at finding that "sweet spot" than Dr. RQ is, even though he's "just" a local neurologist in a small Appalachian town, and she's a big celebrated expert at Hopkins.
That Dr. RQ gave such brisk reflexes a "3" and not a "3+" after the other doctor had commented several times on how strong they'd been suggests her downplaying any abnormalities my exam suggested. A "3" suggests completely normal reflexes, whereas a 3+ would at least SUGGEST brisk reflexes, which mine obviously are.
Why would she do this? Because she'd already made up her mind that I was malingering or being hysterical for some absurd reason. Maybe she'd thought I'd somehow made my reflexes jerk myself--though the first time it happened it surprised me every bit as much as the doctor. This kind of suspicion, of course, is one of my pet peeves and the bane of every patient suffering from a mysterious disease--a high percentage of which end up being, in fact, neuromuscular in nature.
As the exam continues, I suddenly recall a strange sensation that occurred about 5 or 6 times last winter but hasn't since. This, in fact, is likely the "neuropathy" Dr. J had first asked about, and I should have described it to her rather than blowing it off--but it only happened about six times within a month or so, and that was some time ago, and with my Swiss cheese brain I hadn't even thought of it when she used the word--I was thinking of peripheral neuropathy--abnormalities in my legs and arms, and these still are not as scary as my hypersomnolence and breathlessness. Though the episodes of facial neuropathy were few and haven't recurred recently, they were alarming, and when I think of it I begin to tell her about it.
Me: Oh! And for a while there I kept getting this weird sensation when I touched a spot next to my nose [I point out where]. It was like an electrical current that shot down my face and then across the top of my teeth.
Dr. RQ: [Talking over me, almost cutting me off.] Yeah, yeah, yeah. [I do NOT exaggerate. She basically said to me, "Yeah, right, bullshit."]
Me: [Getting angry now.] And I had a bad fall near Christmas when my legs just seemed to stop working. I ended up with a black eye and a concussion.
Dr. RQ: How did you do that? Did you fall on your eye? [Her tone conveyed, once again, that she thought my words were bullshit.]
Me: [Now becoming impatient and demoralized, knowing the visit has been a waste. I answer with a bit of heat but still in a respectful tone.] No, I landed on my nose and it bled like crazy. Maybe it bled a little internally, too.
Dr. RQ: Did you pass out?
Me: [I know this is a trick question; I've read that concussions only occur after passing out. However, I have no recollection of passing out, but perhaps between the time when I hit and I found myself on the sidewalk drowning in gushing blood, I had passed out. By now, though, I feel quite shut down and simply say...] No. [I later email her and tell her I didn't go to the ED but was checked out by an ambulance crew called by witnesses. Later that night, I began throwing up, and I went to the ED and was diagnosed there with a concussion.]
Dr. RQ completes the examination.
Dr. RQ: Your muscles are completely normal. I see no sign of weakness.
Me: [Now feeling close to despair because I know I won't get the answer I see--a simple yes or no to this very possible diagnosis.] Well, why then did Dr. A say he'd diagnose me with multiple sclerosis if I were younger [and the white lesions in my brain also showed up in my cervical spinal cord, which they don't]?
Dr. RQ: [The queen herself seeming to lose her cool] I'm not even going to get into that. I am evaluating you for myotonic dystrophy only.
[Oh, sorry. Every other doctor at Hopkins who has seen me has also treated me for a period of time; I didn't realize you have no interest whatsoever in what might be causing my problems, nor do you care to help me find out.]
Me: [Getting upset and teary] So, you won't be ordering a DNA test?
Dr. RQ: No. It's an expensive test, and I see no evidence that would warrant my doing that. [She pauses, once again giving me, with tears streaming down my face, an exaggeratedly perplexed look.] Your reaction confuses me! It's as if you WANT to have myotonic dystrophy.
Me: [Now I'm practically bereft. I've been waiting months for this meeting, looking forward to a definitive answer that will either explain my nearly lifelong medical problems or rule out a very possible cause of them--either one extremely valuable to me and my family, since myotonic dystrophy is a genetic condition. On a practical level, the visit was difficult. I would drive six hours roundtrip, spend $50 on gas and had spent $100 on a hotel room so I could get to her office by 9 am, money I don't have after having to stop working due to my feeling so bad, and all I can think now is that I've wasted all this time and money and hope because this woman has decided not to help me.] No, I don't want myotonic dystrophy, of course--but I want to know what the hell is wrong with me! I can't do anything anymore; I can't take a walk without being exhausted; I can't go up stairs without being exhausted; I barely have the energy to have sex anymore; all I do is sleep 24/7--I want to know why! [The disappointment is so great I can't help but become a bit melodramatic.] I might as well just drive my car into the harbor.
Dr. RQ: [And I'll admit her response is kind of funny, and quite apt.] Well, you can do that if you want. But I was going to say that I can go ahead and order an EMG for you, though I'm nearly positive it will be normal as well.
Me: Okay. [What else can I say? The edict has been handed down. And at least it's something that can help solve the puzzle, though not nearly as specific as the DNA test would have been.]
Act One Ends.
See what I mean, sports fans? Does that sound like a productive encounter? Does Dr. RQ's behavior sound appropriate to you? I'm a loss as to why she displayed near hostility toward me--it was nothing less than bizarre. Maybe it's because I don't look like a typical middle-aged, chronically ill woman, and this makes me a target for a weird reverse discrimination from (some) doctors. I don't look sick, so I'm not sick.
Let her live inside this reasonably well-kept if internally whacked middle-aged body for one day and then treat me that way. At the very LEAST, have the empathy and imagination to entertain the possibility that, yes, I might look halfway decent for my age, but I feel like complete crap. Like very specific crap, actually, with many, many of the signs and symptoms of this disease, or at least something similar. But she couldn't be bothered to help me find the reason for my suffering.
I should not be dismissed as if I were doing all of this running around, spending money on boring things like gas and (cheap, creepy downtown) hotel rooms, and getting more and more exhausted just for kicks.
MORE TO COME
Act 2: The EMG and the doctor who shows FAR more compassion and interest in my case than did Dr. RQ; my incensed (but as respectful as I could make it) email sent to Dr. RQ a few days after the visit, as well as her response, which initially gave me hope we could work through this and go on with a productive doctor-patient relationship.
Act 3: Dr. RQ's report on the visit, more disappointment, my response to her, and next steps--Hopkins, like all hospitals of any size, has a patient advocacy department. I didn't want to go there, but at this point I feel I have no choice. If she treats me this way, she could do the same to other patients, and the hospital needs to know it's employing a ego-maniacal witch. Sorry, still mad. But if they'll order my DNA test, all will be forgiven. They can deal with their employee, and I won't reveal her name. If not, well, like I said earlier, this ain't over yet.
And that will bring you up to date as of today. Now that I have EMG results showing myotonia, I will not stop until I get that DNA test. It's the least I can do for my family.
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