<![CDATA[BERTRAND LIANG, MD - Blog]]>Fri, 05 Jul 2024 03:48:19 -0700Weebly<![CDATA[Mr. P:  Stories told]]>Thu, 04 Jul 2024 19:08:40 GMThttp://bliangmd.com/blog/mr-p-stories-told
Mr. P had been an active referee in professional sports.  He came to us with a diagnosis of prostate cancer, treated elsewhere initially.  He was part of an experimental protocol that we had running at our institution, which had shown promise for that type of tumor, even if there had been diffuse spread, which is what Mr. P had unfortunately experienced.  He was quite a fellow - tough in every way, but incredibly self-deprecating; it was somewhat difficult to separate the person one might or would see on television with the zebra stripes on with the guy sitting in the chair in front of us, coming to clinic to get his therapy.  He definitely had, as one of our nurses noted, quite the personality.  He would tell story after story about players, plays, calls he’d made, calls he’d missed, all in rapid succession during getting some pretty cytotoxic agents, which could cause nausea and vomiting. He’d dismiss these side effects, noting that his time in the military made this all seem like child’s play, and then made a separate note about the stench of locker rooms that referees had to endure when moving up the ladder in that world.  
Coin toss
Mr. P had a resilience was noteworthy to everyone who came in contact with him, as well as those who’d referred him to us.  After he’d been diagnosed with prostate cancer, which was localized at the time, he’d undergone radiation therapy, and continued to work full time despite being actively treated.  He tended to work weekends, and quoted one of his radiation therapists, who had told him, “Cancer doesn’t grow on weekends”, which is why he didn’t have therapy seven days a week.  He added some colorful language describing that sentiment’s accuracy, but also noted that it actually helped him continue to work and keep his mind focused. “Can’t think about your own problems all the time, right?” he’d declared. 
First half
Mr. P also told us of his times when he was an athlete, playing in the minor leagues.  He’d been good but not great and knew after a fairly short time that he wouldn’t make it to the big show, as he called it.  He was philosophical about this, stating that it made it easier to transition to what was his calling.  He started out as an educator in the local school systems and did officiating on the side; I remember he told the staff at the cancer clinic that some of his best preparation for his professional officiating career was based on having to deal with 4th and 5th graders.  “You know, they have the same mentality as the coaches”, he said with a wry smile.  “Players too.  Adjudicating between kids on the playground isn’t much different than on the professional side.  Of course, in the latter, less is at stake.”  Despite being retired, he still had his finger on the pulse of professional sports, being part of the review squad of calls made during the season; coming up with policy decisions based on the experiences in the field, and overall trying to make the referees job part of but not influencing the game. To paraphrase something he said once, “we’re there to be invisible, if possible.  But everyone’s only human.”
Second half
After several months, everyone would be anticipating Mr. P’s arrival at clinic.  He had no shortage of stories, and the fact that we would ask him about things we’d seen, given that he was still watching games, was the ultimate second-guessing game.  Most of the time he’d demur for the latter type questions, and then come up with some anecdote about his own experience and/or screwup, giving the referee who made the call we might have questioned the benefit of the doubt.  He was definitely the kind of person who noted that only the guys in the domain knew what it was like to have to make a call when things were happening so fast - and that the remarkable thing was that they were right most of the time.  He compared it to medicine – “You guys have to know what you’re doing too - you have to make the call on what to do with us, right?”  I remember that so well, and was both chagrined and saddened by his thought, since there were so many things that we don’t know how to deal with in medicine, and that sometimes we have to try things like clinical trials in prostate cancer to see if things might work for patients like Mr.P.  I told him that, but he demurred.  “We all just try to do the best we can,” he said again.  “God knows that’s all any of us can be expected to do.”
Ultimately and regretfully, Mr. P’s tumor recurred despite intensive treatment, and his tumor had spread to many bones causing him a significant amount of pain.  He had already known that the treatment must not have been working, given the intensity of the narcotics he needed to take, and the new bone pain from his chest down to his pelvis.  Of course, his response to this was to tell us another story about his time officiating, about one of the calls he’d made correctly.  “Sometimes, we get lucky,” he said.  “But I guess this isn’t one of those times.”  Mr. P decided to defray getting more therapy and passed away shortly thereafter.  He was subsequently nominated to be in the Hall of Fame posthumously. 
I’ll never forget the statement, and feeling I had, after he’d noted such confidence in our efforts.
And how we ultimately didn’t live up to those expectations.
<![CDATA[A Day in the Life]]>Sat, 15 Jun 2024 15:56:31 GMThttp://bliangmd.com/blog/a-dan-in-the-lifeI watched two people die today.
In my capacity as a hospital doctor, it’s not uncommon for me to be exposed to death as the vagaries of people’s fortunate and unfortunate lives manifest in different ways. But even for me it’s unusual to witness the demise of two patients in the same day in the same hospital, as we do everything we can to preserve life with the technologies and armamentarium availed to us. But today, these two circumstances could not have been more different.
Clinging to LifeIna was 65 years old and had been diagnosed with a rare muscle syndrome that was robbing her of strength ever so slightly and cumulatively each day. She’d had this disease for about 5 years and had undergone many different therapies in order to stem the tide of her ever-increasing weakness. The irony was it was most likely a drug that caused her syndrome, one which was very frequently used and was innocuous otherwise — she’d just had the bad luck of being allergic to it. She’s been followed by her local doctor who’d tried many different things and ended up in the hospital under my care when he had run out of options he could think of.
When I first met her she had also seen a myriad of other providers who’d tried many things, conventional and otherwise, that didn’t really work. I remember talking with her and we had outlined a strict, fairly intense regimen. The approach for her was was essentially going back to the beginning, which when all else failed, was recommended by an international group of experts. She was a very brave soul, and we told her that.
She confided in us that she felt everyone had given up on her. Our team insisted that we had not, and that was why we were proposing the regimen we had. She thanked us and said, “I appreciate your fighting for me,” to which I waved off her approbations. “Thank us only when you start to feel better,” was my response as I shook her hand.
Ina started her regimen and tolerated the drug infusions without issue. This was encouraging since that was the most intense aspect of the treatment protocol.
However, the next morning she wasn’t doing well, with her muscles not contracting well enough for full and deep breaths. We transferred her to the ICU, but she developed respiratory urgency, then failure, followed by heart failure. She was resuscitated once and maintained heart and lung function for a few hours, but then succumbed to her disease.
Our efforts were too late.
Clinging to deathLater that day, I was called to see a young woman in the emergency department, for the staff thought she was having seizures. Wendy had been brought in by ambulance after being found by a security guard, hanging by the neck with a leather belt, in an abandoned building for an unknown length of time.
Her car outside was filled with her prescriptions for depression and other psychiatric illnesses, as well as a set of notations of previous attempts of suicide, noted as “interrupted”. The number of previous attempts was astounding — covering an entire notebook and well over 50 attempts, documented pre- and post-hoc in excruciating detail.
Her evaluations in the emergency department showed significant injuries to her neck blood vessels feeding her brain, and her MRI scans reflected the injuries she’d presumably self-inflicted over the years, and certainly presently.
While Wendy was barely alive when I saw her that initial time, I have seen young people come back and survive this severity of insult, and worse.
Young people have such physiologic reserve their bodies can be assaulted significantly and still recover. But Wendy would not be one of those patients. She progressively deteriorated, unable to maintain a blood pressure, and subsequently went into cardio-respiratory arrest and couldn’t be resuscitated.
Wendy was 31 years old.
DukkaAs a Buddhist, I saw the suffering so intensely manifest in both these women. But the nature of the suffering was markedly different for each, and reflected the natures of wants of to be, and not to be, so vividly.
Ina fought to live by the willingness to undergo countless numbers of treatments in order to preserve her life and the manifestations of it. She clung and hung onto it with urgency and passion.
Wendy fought to die with a similar vigor and fervent nature. Her suffering was also profound, but the only solution she could fathom was to end the journey. Her path was only clear as death, and despite help she could not make her way out of the forest of the demons of her mind.
FettersThe dichotomy of these two patients could not have been more profound, yet the discontent each endured could not be more common. It is difficult to place oneself in the proverbial place of another, but at the same time, we can all identify with the fetters which encase us in a suffering state, in this case perhaps to a less extend (or perhaps more).
Nonetheless, the extremes of disease, potentially, put a different spin on suffering — one might even say it is an external circumstance which is inflicted upon us which is not fair as it is a chance occurrence.
But even in such egregious cases, our fetters are our own. As much as relieving suffering is my job, and every patient who suffers, and particularly the most stark as these two examples, affects me personally, it teaches me to look beyond the concepts of our bodies and desires, since that is what really drives our freedom.
I have absolute compassion for all of those I see actively suffering, and at the same time am grateful both of my ability to minister to the sick, and see that my karma has allowed me to be relatively healthy to be able to do so.
However, it is a glaring reminder that we are the harborers of our own freedom, no matter what the circumstance, no matter how severe, no matter how judged. Our practice trains us to be in the moment, to chose what our consciousness attends to, and what peace is around us if we choose to find it. And again, how those who cannot find their way, deserve our absolute, unmitigated compassion.
KarunaIna and Wendy show us that suffering comes in different flavors and forms, as does happiness. That while we can see the angst of others, through this we can find the miracles of our own lives, we can appreciate what we have, we can choose to be in the moment, this beautiful, wonderful moment.
I can only imagine what suffering the families of Ina and Wendy, and all the families and patients I’ve had the honor of treating, must endure. I can only practice the compassion engrained in my Buddhist practice and remember no matter how tired or sad or depressed I might feel due to whatever causes and conditions warrant, that compassion needs to be endless, since there are always others who are suffering more than me.
To paraphrase the Dalai Lama, if we want others to be happy, and if we want to be happy, practice compassion.
And as has been noted by many, may we not wait until we do not suffer, to experience happiness and peace.]]>
<![CDATA[Mrs. M:  Early influences]]>Sat, 15 Jun 2024 15:54:54 GMThttp://bliangmd.com/blog/mrs-m-early-influencesNoviceI met Mrs. M when I was a medical student, in my fourth year. I was doing my sub-internship, where we moved from being a neophyte third year student into more responsibilities of a neophyte fourth year student — presumably knowing a bit more after completing our initial clinical rotations. It was the first step toward transitioning toward being an intern and then resident, and part of the process of becoming a full-fledged doctor.
Mrs. M had been admitted to the hospital by her attending physician, a caring and expert clinician that most of the students were afraid of. He was demanding, albeit always willing to teach, but was a tough taskmaster and didn’t take well to any level of sloppiness or lack of rigor.
His patient was a somewhat frail Japanese woman with a soft voice but incredibly tough-minded, being very vocal about what she did and did not want to tolerate in the hospital.
She was being evaluated for what appeared to be transient ischemic attacks, known commonly as mini-strokes, and at the time, insurers allowed patients to be admitted to getting all the requisite tests required fairly efficiently, something less tolerated today.
When she arrived on the floor, her doctor had already seen her and left a note on the chart on what he wanted to be scheduled, from ultrasounds to echocardiograms to specific types of blood tests, which I noted dutifully on my note cards, after which I went to see the patient.
AppearancesWhen I arrived, the patient was sitting on the chair next to her bed, with her husband next to her. They were conversing in Japanese and stopped when I walked in. Mrs. M asked who I was, and I told her that I was working with her doctor and was a fourth-year student who would be covering her case with the resident, who would be in later.
She looked at me up and down and softly asked me if her doctor knew about my being there, to which I noted he did. She then began articulating the plan of evaluation to me, almost verbatim, in a soft tone, but clearly and concisely, with the appropriate medical jargon. I was more than surprised and was speechless while I was writing down what she was saying.
I started going through the history of her attacks, which she gave in precise detail; that she’d lose vision in one eye for several seconds, then it would gradually come back first with decreased acuity and then with gradual clearing of her vision field, always monocular, always resolving over several hours, having occurred four times over the past two months.
She then went into her past medical history, her social history, and a symptom review without me asking for it. When she finished, her husband smiled and said, “I will leave you for the physical examination. See you tomorrow.” And he left.
I finished up my physical examination of Mrs. M, and started relaying that I would be scheduling the tests her doctor had ordered, and had already filled out the paperwork and would be running some of it down to the labs during the afternoon. I would be sure to let her know once the tests had been scheduled.
She noted that she appreciated the concern and then asked about my experience with her doctor. “I worked a lot with him during my third year,” I said. She nodded knowingly. “He’s a very good doctor, as I’m sure you know,” she said. “It’s not just knowing but knowing how to convey it the best way possible to patients. He’s very good at that.” It was my turn to nod, agreeing.
The UnexpectedThe next day, I was paged down to the ultrasound suite emergently. I ran out of rounds, and down the four flights of stairs to get to the suite. There, I saw Mrs. M, sitting in a gurney, calmly moving her hand over one eye then the other, and squinting.
When she saw me, she gestured for me to come over, before which I was intercepted by the technician — “She’s having a TIA. Here. You need to get her back on the floor. Now.” I told the tech that I’d talk to the patient and then my resident — it shouldn’t take more than a few minutes.
As I approached Mrs. M, she relayed to me that she’d lost monocular vision again. “Same thing as before,” she noted. “Probably another TIA.”
I quickly examined her but only found the isolated finding. I grabbed an intravenous set up from the storeroom across the hall, and put in an IV while paging my resident — when she called back, she agreed with the plan to put Mrs. M on anticoagulation, the therapy at the time.
I told the tech that I would bring Mrs. M back to the floor to avoid any delays in transport, got her into the elevator on her stretcher, and pushed the 10th-floor button.
“The technician did finish the ultrasound, but he was flustered when I told him that I was having a TIA,” she noted with a somewhat bemused tone. “I’m glad you were able to come down right away.”
We got to the floor, and the resident had already ordered the heparin, which was waiting in her room. We hooked up the patient to the drip and scheduled her for blood draws later on.
“I’ll be back to check on you in about an hour — if your vision gets worse, let the nurses know,” I said. “Of course,” said Mrs. M. “It’s getting better already.”
Learning, discoveryI called Mrs. M’s doctor to relay what was going on with her; his nurse put me right through to him. He peppered me with questions about her physical exam, how long she’d been having symptoms, what I thought was going on, and what we were doing about it.
When he finished his interrogation, he acknowledged he approved of our management and asked if I could let the patient know that he’d be in later on in the morning.
At about noon, I went in to check on Mrs. M. “My doctor has already been here,” she noted. I apologized for not telling her he was coming by, but I did let him know what was going on.
“Yes, he said that. Sit down, let’s talk.”
Surprised, I sat down.
“He’s very impressed with you. He also told me a lot about you, too. Tell me, what are you planning to go into?”
I was a bit tongue-tied, not being prepared to talk about my hopes for a future profession with a patient. “Don’t worry,” she said in a motherly tone. “I was a neuropathologist at Kyoto University before moving to the United States. So I do understand what you must be going through.”
Being mentoredSo that’s how she knew how to relate her story and history to me. And why she could so easily assess her own symptoms. I wondered why her doctor didn’t tell me that and relayed that to the patient. “I guess he didn’t want you to feel intimidated,” she noted off-handedly.
We spoke for some time, and I confess, she provided me some advice that really strengthened my desire to enter into Neurology. I remember her reflecting back what I liked and didn’t like about clinical areas, the kind of research I was interested in, and how I knew it might all change.
“It will, you know,” Mrs. M said knowingly. “But if you’re like most, the core of your interests won’t. You’ll do just fine.’ I thanked her for listening and the advice and started to leave the room.
“And by the way,“ Mrs. M noted as I walked out the door, “Thank you for coming so quickly this morning. You probably prevented me from having a stroke.” I demurred, relating the fact that she was the one who had made the initial diagnosis. “But being attentive — that is what you did so well. I thank you once again.” And she put her hands together, and nodded her head.
The UnforgettableWe had Mrs. M in the hospital for about a week, and she left on a blood thinner, having no additional events. Her doctor related to me that she had done well at home and admitted to me that he purposefully didn’t tell me that she was a doctor because she didn’t really want anyone to know.
He also told me that she and her husband were going back to Japan “To take care of their parents, who are in their late 80’s”. I could only marvel at that.
One day, several weeks later, at my apartment I opened up the mailbox and there was a box from Marshall Fields. Inside was a bright red tie, and a note.
“To my budding doctor, good luck in whatever you do. Kind regards, Dr. S M, Kyoto, Japan.”
Touched, I wore that tie the next day and many days after that.
While that tie wore out years ago, I never discarded it, remembering that so important, early influence in my profession.

<![CDATA[Dan: “Happiness is good health and a bad memory.”]]>Sat, 15 Jun 2024 15:52:00 GMThttp://bliangmd.com/blog/dan-happiness-is-good-health-and-a-bad-memoryPermanent residentI met Dan many years ago when I was working at a Veterans Hospital, or VA as it’s euphemistically called. Dan was a marine and had done his time in Guam and the Middle East, serving in various engagements during his 10-year history in the armed forces.
During one such engagement, apparently, he had contracted AIDS, although in which specific country was unclear. He had no history of intravenous drug abuse, and during my discussions with him, he described himself as a “red-blooded patriot”.
After being diagnosed, he was brought to the VA to be further evaluated, particularly since, at the time, AIDS was less prevalent then than it is today.
Dan never left the VA. While his AIDS was relatively stable with respect to his immune system, he began accumulating the numerous other aspects of organ involvement that AIDS patients tend to acquire.
According to his records, the first was an infection — Mycobacterium avium, which was in his bone marrow and which he was placed on several different antibiotics. He seemed to improve with the therapy when he developed pneumonia — presumably of pneumocystis type. It was caught early, and he was treated for this as well; in the meantime, he developed kidney failure, which required dialysis. And the list went on and on, with Dan having a chart of several volumes and as thick as several Gutenberg Bibles.
During this time, particularly at the time of his diagnosis of renal insufficiency, one doctor noted the patient having some difficulty with word finding, and executional tasks. At the time, it was chalked up to the kidney problems. But subsequently, it persisted, and the renal service asked the neurologists to become involved. Their assessment, backed with neuropsychometric testing, was that Dan had early dementia, something at the time recently described in the medical literature in AIDS patients.
Happy TogetherDan was being followed by every medical service at the hospital, both because of the involvement of their particular organ system of specialization, but also because of the number of things going on with him with the diagnosis of AIDS. Teams sometimes had to compete or be in queue to get into his room to assess how he was doing, and he had the thickest chart at the nursing station by far.
I saw him when he’d been in the hospital for about five years, and trying to catch up with all that had gone on was rather a Herculean task. Nonetheless, one of the things I noted about every note was the mention of the mood of the patient; he was inexorably happy all the time.
He was always smiling, and whether he was hooked up to an EKG machine or doing Pulmonary Function Tests, he was seemingly never disturbed by any of it. I found him to be the same way, and during my time with him, I noted that despite some issues with word finding and occasionally getting lost on the floor where his hospital room was, he was socially competent and otherwise reasonably functional.
However, he never could remember my name, or anyone else’s for that matter. Nor could he recall what had happened to him the previous day, or even the previous morning. His lack of immediate term memory was profound, and reintroducing myself to him every day became part of my routine.
Often times when rounding on him in the morning, I’d hear him say to the nurse in the room, “It’s a great day!” And then when I’d come in, he’d repeat himself. For him, it seemed, every new day was a great day, and to a certain extent, that made sense.
TimeAfter a couple of months of following him on the ward, I noted one morning he seemed to be having issues with breathing, and he looked ashen. We sent him for a chest x-ray, and it appeared that he had severe pneumonia and that we’d need to start antibiotics once again.
Dan smiled weakly when the team told him this and just closed his eyes. He was transferred to one of the floors with more acute monitoring, although not to the intensive care unit, since long ago, he had signed a “do not resuscitate” order when he was thought to be of sound mind, given his diagnosis.
Going homeI signed out to a colleague about Dan and his status and left for the night. The next day, as I walked in and sat down to speak to the covering doctor from the night before, he gave me the news that Dan had died during the night.
I was stunned; despite his diagnosis and all the things that had happened to him, he was like a pillar of stability at the VA — I just assumed he’d always be there. I just sat there for a moment. My colleague noted that he had seen him later on during the night and, while weak, was stable. “It was just his time, I guess,“ said my colleague.
“And you know what he said to me when I was leaving? He said, ‘It’s gonna be a great day.’”
May Dan Rest In Peace. He was 29 years old when he died.
<![CDATA[Mr. K:  Looking beyond what we see.]]>Fri, 03 May 2024 13:18:31 GMThttp://bliangmd.com/blog/mr-k-looking-beyond-what-we-see​Dichotomy
Mr. K was about 68 years old when I met him, in the emergency department when I was a resident on call.  He was a chronic visitor, having a long history of alcohol abuse, and understood the system well enough to be able to come in at the right time in order to be admitted to the detoxification unit on the first floor of our hospital.  I had groaned when I received the call from my senior resident that an alcoholic was coming in, since these patients were typically needy and just admitted for prevention issues, and I knew that I had other patients needing to see me as well.  Flipping through his chart, he’d gone through the pangs of delirium tremens, or DT’s for short, and had experienced frank seizures when he didn’t get to the ED quickly enough after pushing a pint of whiskey or vodka or other hard liquor into his system, and passing out for some time.  He was absolutely unapologetic and unrepentant in his behavior, and seemingly saw it as some sort of usual rite that he’d go through every so often, with little thought or reservation.  
Mr. K’s chart was probably half a foot thick, and littered with the notes of residents I knew before me who could tell his story as well as the patient himself.  After flipping through the last discharge summary, I walked into the room where the patient was being evaluated by the ED nurses, noting the detox nurse had already seen the patient.  As I sat down to talk to him, I could smell the pervasive odor of Jack Daniels, mixed with stale cigarette smoke and urine.  Mr. K wore a dirty white t-shirt, covered with a faded flannel shirt, probably originally red but long ago losing its tartan hue, with a pack of Camels sticking out of the torn front pocket.  His khakis were stained in the front with what appeared to be red wine, and there were various holes in the thigh regions on both sides, which the patient noted to me when he saw me looking at them, “cigarette burns - you get ‘em when you fall asleep smoking in bed,” and smiled.  
I began asking the patient the standard questions about what had brought him into the hospital, how long he’d been drinking, what was his usual drinking routine, etc., but he just waved his hand in the air.  “The story hasn’t changed, it’s all there in those papers with my name on ‘em,” he said, almost kindly.  “I see a new crop of you guys every time, but I don’t need to tell ya the same story twice.”  He grinned at that point, showing his yellowed teeth, and stuck a cigarette in his mouth.  “Don’t worry doc, I’m not going to smoke here.  Just need to feel it, ya know?”  He laughed and closed his eyes.  Putting down my pen, and then sighing, I told the patient I’d need to examine him, and he just nodded after opening his eyes.  Despite his disheveled appearance, there was almost a brightness in his eyes, a twinkling which gave a message that he knew all that was going on around him.  He sat up in his chair, and I started to go through his exam, which despite his physical appearance, wasn’t as bad as I thought it might be.  When I asked the patient when his last drink was, he was precise.  “40 hours ago, doc,” he noted, briskly.  “That’s why I’m here.  Don’t want the shakes, ya know?”  Indeed.  He no doubt knew more about the DT’s than most of us.
After he’d been admitted, and the standard orders with Valium like drugs on the ready for the patient, I’d left to go see another patient on another floor.  When I went back to see Mr. K, he was snoring loudly, sitting in his bed, the one near the window.  I walked up to his bedside to check on any numbers the nurse had recorded, and saw a faux leather journal opened up in front of the patient. I couldn’t help reading what was there; there was a poem, scrawled in pencil, along with a drawn figure of a man in bed with an IV hooked up.  The poem was powerful, only two paragraphs of about eight lines each, but yet poignant, describing the pain of life on the edge, and the drawing perfectly accompanied the piece.  As I finished reading it, Mr. K awoke, his eyes red and somewhat frantic; he subsequently stretched, belched, and then settled into his appearance to which I first met him.
“Mr. K, I couldn't help reading your book - did you write that?” I asked, trying not to sound condescending.  
“Yeah, just crap I throw down on a piece of paper - done it for years.”  
“With all due respect, it’s really good,” I noted, appreciatively.  “I used to read alot of poetry in my days before medicine.  The imagery is fantastic.”
Mr. K belched again, and I could once more smell the stale odor of embedded smoke from those Camel cigarettes, along with the whiskey.  “Ah, yep.  It’s crap.  It’s just stuff that comes into my head, you know?  When I’m not drunk.  Better than therapy, right?”  He smiled at the same time flipping through the book.
“How many poems do you have in there?” I continued, still interested despite the patient’s dismissal.
“No f-ing idea, doc.  I just write ‘em.  You can read if you want.  Here - nothing to hide.”  He handed me the book.  As I flipped through the torn and stained pages, I could see the angst as well as joy he could express; the sadness of loss, and the observation of simple things in a different way, like manhole covers where shadows during the day gave it different hues, to the same glass before, during and after binges of alcohol.  I was no critic, but it was clear that Mr. K was able to express his thoughts incredibly well, and his figures flowed with the words in a unique way.  Looking up, I asked the patient if he’d ever want to publish his poems, or his art.  “Nope,” he said, loudly.  “Not interested.  I like what I am and what I do.  F the rest of the world.”  And he closed his eyes once again.
After thanking the patient for letting me look at some of his work, I walked out of the room, both amazed and sad.  I was embarrassed at my lack of compassion and judgmental perspective before I had admitted Mr. K, and at the same time feeling incredibly fortunate to have met him.  I bumped into my senior resident walking down the hallway and asked him if he had known Mr. K was a poet and artist. He turned to me, looking very tired with dark bags under his eyes, his crumpled hair, and took a swig of his Hawaiian Punch from a white, foam cup, no doubt obtained from the Nurse’s Station, and probably the only thing he’d eaten or drank that night.  “No idea, Bert - never asked.  He’s just another first floor alcoholic - we’ll get him out in 48 hours, hopefully.”  As he walked away, I considered stopping him, telling him what I’d read, the imagery of the words, the impression it left on me.  However, I thought better of it.  I realized that we all have ways of coping with the realities in our situations.  And again, how lucky I was to have seen a glimpse of an incredible way that Mr. K was able to cope with his world.
<![CDATA[David:  Some patients fight demons beyond their diseases.]]>Sat, 16 Mar 2024 16:47:12 GMThttp://bliangmd.com/blog/david-some-patients-fight-demons-beyond-their-diseases​David was referred to me because of a severe neuropathy secondary to being treated with a platinum-based drug for his germ cell tumor.  He was fairly young but looked much older than his years.  He’d lived on the streets for a very long time and had a history of being in and out of halfway houses and shelters but somehow managed to meet his appointments with his doctors over at the cancer center.  Surprisingly, he’d completed his courses of chemotherapy pretty much on time despite his social situation but by report he often showed up drunk to clinic appointments, or to his chemotherapy treatments.  He was a quiet drunk, as he termed it, one allowing him to delve farther into a world where he needed not deal with reality of health and the challenges of the street.  So it was no surprise that his neuropathy was very profound, with significant loss of sensation, with the painful muscle cramps in his feet and legs associated with significant and advanced disease.  When I first saw him, he was sitting in the clinic, in a disheveled state.  His walking was clearly that of someone with a lack of sensation in his feet, picking up his legs very high with subsequent slapping of his feet when they came down.  We walked together into the clinic room, and I noticed his flat affect of minimal tone and inflection of his voice.  As we sat down to discuss his case, he brightened somewhat, noting that he hoped I could help him, which I found to be a good sign.  
As we delved into his history more, I was surprised to learn that he had been a good student in high school and had started college at one of the state schools in the area.  He then began having as he called it, issues, which he would not specify, and he left school and began wandering.  He didn’t know his family history, as he hadn’t talked to his parents for years.  He started drinking, in his words, because that’s what you do in the shelters.  While he knew the date and where we were, he was lacking in his knowledge of current events; but then, he performed calculations with alacrity.  I became more interested in his mental status and tested him further; while he could write and read, he couldn’t draw a clock or a time on a clock, and he was unable to imitate certain hand movements. He could tell left from right but had difficulty with consistently naming his index or pinky finger.  And pointedly, sometimes during these tests and questions he would start answering, and then stop, making a face like he was being bothered by something, and then continue on again.  He could recall during these episodes when I’d ask him something, but when I would query what was going on during those events, he’d just say something like “I’m thinking,” or “nothing”.  
His neuropathy was indeed severe. He had minimal feeling in his feet, including a lack of position sense to the ankle.  I could see his sneakers had wear marks where he’d been scraping his feet.  During the exam, his feet also cramped up, causing him significant pain.
I asked him about any mental changes that he’d noted in the past, and he said that he felt he was just getting older, and that his memory wasn’t what it used to be.  I hadn’t really seen any memory issues and told him so.  His response was interesting; he said, “I get along.  What else do I need.”  And then he became almost morose, silent for the most part with only yes and no answers to most things.  
I prescribed some medications to try to alleviate both the neuropathic changes in his feet and the painful cramps he was experiencing.  I was aware that with his alcohol issues, I would need to be careful about him using morphine derivatives due to potential for abuse.  I was frank with him about that concern, but his notation was that “Pills aren’t my thing.  I like Jim Beam.”  I did warn him that alcohol would make things worse, to which his response was that alcohol makes everything worse, saying it without a smile.
I also told David that I’d like him to undergo neuropsychometric testing to define better some of the abnormalities found on his examination.  He refused, citing that his brain was his business, and he didn’t want anyone poking and prodding his mental state.  This was somewhat surprising to me - not that he refused, but that he had the insight to understand that the assessment would be to examine why he was able to do certain mental tasks, and not others.  I pushed him a bit on this, but he became sullen and I didn’t bring it up again.  
When I saw David again, his neuropathy was stable, but the cramps were worse.  As well, his personality was much more aggressive, and his speech was more pressured and urgent, but low in volume almost like a loud whisper.  He refused some of the mental status examination but did allow me to assess his neuropathy. I asked him if anything had changed, and his response was almost paranoid - he said, “Should there be?”  I was concerned about this change, and again suggested further evaluation and work up, this time with psychiatry, which he flatly refused, with the same type of intonation that he noted previously.  I asked if he would be willing to change some of his medications to address the cramps, to which he acceded, but only with some cajoling.  I scheduled an appointment for David to come back to see me in less time than usual, as I was concerned about him.  Usually, we’d be able to call the patient for an interim assessment if needed, but since David had no mobile phone, and had itinerant status otherwise, the challenge was to ensure his continuous care.
Six weeks later David came back to see me.  I didn’t recognize him at first.  His hair was combed, he was wearing a button-down shirt, khakis, and suspenders, although he still had his old sneakers on.  He greeted me like an old friend, and his friendliness was almost alarming.  He was cooperative with the examination, but I found that his neuropathy was not improving, and he still had painful cramps; his mental status exam was slightly worse, with concentration somewhat off.  However, I took advantage of this mood to again suggest additional tests, from neuropsychometric testing to a visit to psychiatry.  This time he agreed to be seen, and rather than taking a chance of a change of heart and mind, I called in a consult for the patient to be seen right away - at least for the psychiatric assessment.  I was able to get one of the residents to come to my clinic for evaluation.  I went to use another room and allowed the consultation to take place, and started seeing other patients.
Close to the time at the end of my clinic, one of the Psychiatry attendings called me - he wanted to ask questions about David, and talk about the consult.  He listened as I related his mental status exam, his history of school performance, dropping out of college; his homelessness and drug abuse.  My Psychiatry colleague noted these things were important, and also noted that the resident had found not only these things but also some psychotic tendencies as well.  He asked if I noted that the patient would stop mid-sentence, then continue after a pause, to which I noted I had.  He asked what I thought, and I said of course I was concerned about a seizure, but he apparently heard what I had been saying during that time and could recall it.  What my colleague then noted was definitive - he said, “Yes, that’s what I would’ve thought.  But what the resident found is that David is hearing a woman’s voice - asking him questions.  Accusing questions.  Questions of why, motivations; of his worth.  Pretty specific.”  
Obviously, I knew this was a very bad thing.  My Psychiatry colleague asked about family history since the resident couldn’t get any.  I noted my lack of success as well.  “We think he’s schizophrenic.  Obviously we need to assess other things like manic-depression etc., but his history and behavior is pretty clear.  Amazing he’s made it this far for so long, especially with cancer.”
As a neurologist and cancer doctor, it was somewhat embarrassing to have missed putting together the pieces of the puzzle.  I could treat his neuropathy the best I could, but the struggles David was undergoing on a daily basis was far more than a history of cancer and side effects of therapy could be.  We arranged for David to be followed in the Psychiatry service, particularly with the schizophrenia expert group there, and I continued to see him for his neuropathy.  With time, I could see David improving, although the only thing I did for him was to decrease his painful cramps; the neuropathy never really changed.  
I always remember David for what I need to consider as the whole patient to be evaluated, rather than a historical disease and needed treatment.  The patient may be fighting more things than our subspecialties can imagine or consider.
<![CDATA[Mr. K: Treat the patient, not the numbers.]]>Sun, 11 Feb 2024 22:33:42 GMThttp://bliangmd.com/blog/mr-k-treat-the-patient-not-the-numbers​Mr. K
I walked into the examination room, to be greeted by Mr. K, a big, burly man of about 35 years.  He had a work shirt on, indicating his place of employment, where apparently, he was a truck driver.  As we got to talking, it was clear that Mr. K didn’t really know why he was seeing me, and it was going to take some detective work to figure it out. 
His chart was somewhat difficult to access since he was a workman compensation case.  Regardless, with Mr. K and what I could discern from the previous doctors who’d seen the patient, I could at least piece together what was going on and the need to access neurologic input for Mr. K.
Mr. K had noticed that, over the past few months, that he’d been losing strength in his left hand, and although he was right-handed, it was acutely obvious.  “I fashion metal art from old coins,” he noted somewhat proudly.  “Totally self-taught.  I learned from YouTube videos, and with some background in the trades, just put together one plus one.” 
He showed me his wedding band, which was fashioned out of an old Liberty Dollar, of which his ring and his wife’s were from the same coin. 
“But now, I have a really hard time with it.  My hand is so weak sometimes, I can’t keep my machinery steady.”  His artwork was really impressive, and he’d been able to create quite a remarkable adornment of things.  He showed me some of his advertisements, and he could do everything from fishing lures to money clips to almost anything a client would want. 
“Most of the business is really custom,” he continued, “although everyone sees what’s been done in the past.  It’s mostly about the year - something makes it special, and I can identify some coinage at that time, and make something they can remember it by.  It keeps me busy,” said the patient, with a smile.  But then a cloud returned to his face.  “But I really haven’t been able to do anything for the past three or four weeks.  Just can’t keep my hand strong enough.”  I nodded, looking at some of the reports I had been able to pull up.
Mr. K also noted that he was numb in his pinky and fourth finger as well.  This also had been going on for several months.  Just looking at Mr. K’s hand, I could see the prominent atrophy of his first dorsal interossei muscle, the muscle between his thumb and forefinger. 
It wasn’t subtle.  And, similarly, on the palmar surface, the muscle under his pinky finger was also flattened, which wasn’t unobvious either.  The patient had seen a local doctor, who had noted that these findings in his hand, but discounted that the sensory findings had anything to do with his grip strength, nor the apparently earlier atrophy which probably was less obvious than before. 
When he continued to complain of symptoms, he was sent to an occupational medicine doctor, who also discounted a relationship between the sensory and motor symptoms but ordered an EMG/NCV study for further assessment.
Passing papers
When I looked at the neurophysiology studies, I was surprised to see it hadn’t been done by a neurologist, but by another service.  Moreover, it was frankly, incomplete, and really focused on looking for carpal tunnel syndrome, rather than looking for all three major nerves in the hand. 
And, not surprisingly, the conclusion of the study was that the patient had carpal tunnel syndrome, and there was indeed some slowing across the carpal tunnel, but it was very mild, and, on the right hand, not the left, which was called normal. 
As I followed the subsequent follow up, the patient had been told by a physician that all he had was carpal tunnel, and that he’d be followed up with Physical Therapy.  When that hadn’t really been helpful, and his symptoms were worse, he’d been sent to Neurology for further assessment.  This was over a month ago, and according to the patient, wherein he’d gotten worse with his sensory changes and weakness.
Just by observation, it was clear that the patient had an ulnar neuropathy, and that the studies he’d had done were inadequate to help in the diagnosis.  His neurologic examination localized to the nerve, and in particular, distal to the carpal bones, in that this was past the point where apparently the EMG/NCV study was done, at least for the most part. 
The sensory changes, the areas of muscle weakness, and atrophy - all of it could be localized to this one nerve.  The occupational physician had done what he could - he’d only trusted the conclusions of the other physician who’d done the examination, but that exam and the numbers weren’t either complete or even correlated to the clinical course. 
The patient had told a clinical story which was localizing, his current exam was not only localizing but unfortunately stereotypical, which means probably later stage than it should’ve been and the patient had suffered as a result. 
It was a classic case of just playing with numbers, and not looking at the patient, something in busy practice can happen since it’s more reflex rather than consideration of the entire patient. 
Beyond the numbers
We were able to send the patient to a specialist hand doctor, where after seeing my examination notes, took the patient to surgery right away to relieve a compression on the ulnar nerve.  The last notes I saw in follow up with the hand surgeon was that the patient was beginning to be able to grip well again, and the sensory changes had stabilized, if not improved several months later with the assistance of physical therapy. 
I did get a note from the patient letting me know that he was “back in the saddle”, and was doing his side business again, in case I had any requests.  I could only smile - I was just happy that hand surgery and follow up PT was able to get the patient back towards recovery. 
And again, made me feel fortunate with the realization that I had the luxury of understanding that just playing with numbers isn’t what the art of medicine, and Neurology, was all about.
<![CDATA[Tony: Hearing what’s said.]]>Mon, 29 Jan 2024 17:49:59 GMThttp://bliangmd.com/blog/tony-hearing-whats-said​Tony
Tony came into clinic with his wife, who was dominant with respect to her demeanor - talking nonstop to her husband, as I entered the room.  She didn’t stop despite seeing me, and Tony actually arose to greet me as his wife continued speaking to her husband.  “Nice to meet you,” I noted to the patient after shaking his hand, and said the same to his wife, who continued to speak to her husband and just nodded her head at me, with the concluding clause, “...and you need to remember that.”
After sitting down, I asked the patient why he was in the Neurology clinic.  His wife began speaking, and I asked her to stop, so that I could speak with the patient and get his perspective.  After a strained silence of a couple of seconds, the patient began. 
“I think I have dementia,” noted the patient, quietly.  Looking up, I asked the patient why he thought that. 
“Excuse me?”  I repeated myself, louder this time. 
“Well, I don’t remember things anymore.  My wife here tells me that.” 
His wife added, “And he has family that has dementia.  His dad’s dad had dementia, and his mom’s brother.”  I asked Tony if this was true, and he confirmed that it was.  “How old were your family members when they were diagnosed?” 
“Well, I think grandad was at least 80, and my uncle was probably around that age.” 
“Any one else?”  “Not that I know of,” said Tony, shaking his head. 
I then explained that familial dementia was rare, and that at Tony’s age, in his early 60’s, if it was familial, it might follow the same pattern.  But usually that familial dementia presented itself early, and it was the spontaneous type that presented late.  
Tony’s wife spoke up.  She’d looked up Alzheimer Dementia on the internet, and that Tony exhibited all the symptoms of the disease.  He was forgetful, and often sullen.  He didn’t speak as much as he used to, and when he did, only a few words. And sometimes he just didn’t answer he when she asked him a question, and just continued to read or watch tv or do whatever he was doing. 
“His behavior is very much like the website I was reading,” she concluded, with finality.  “We scheduled this appointment since his primary care doctor wouldn’t prescribe the Aricept that I wanted for him.  She said we needed to see a neurologist first.  That’s why I, I mean why we, are here.” 
I listened, dutifully writing things down, considering how Dr. Google had made yet another diagnosis for me, and all I needed to do was to write the prescription.
I asked Tony some questions, regarding getting lost, or being found in an unfamiliar environment, or wandering - all of his answers were negative, noting that he knew his memory wasn’t what it was.  I asked about his wife’s report, and whether he was ignoring her. 
“Not intentionally,” he said, somewhat hesitatingly. “I just don’t hear her sometimes.” Looking up, I saw Tony’s spouse roll her eyes.  “I just don’t, really.“ 
I asked the patient what he used to do for a living, and he had worked in a canning factory for about 20 years.  They would regularly test hearing, and unfortunately one day, when his hearing was tested, his boss sent him out and had him go to the clinic at the company, then took him out of the plant.  He was told he’d need either to retire or to take another job, which would be in the adjacent offices. 
“I just took retirement,” said Tony.  “Biggest mistake I made.  But I didn’t want to learn how to be a clerk.  I just wanted to be with my friends.” 
Changes and discovery
“He was miserable,“ noted his wife.  “But he started to volunteer at the high school, but stopped after having problems understanding what was going on.  That was a few months ago.” 
I asked Tony what he perceived about that, and he just said he just didn’t recall being told things or hearing what needed to be done at the school’s shop.  “I just decided I wasn’t all there anymore and quit.”  There was a silence.
On examination, Tony actually did well on virtually everything except concentration abilities; he didn’t even try to spell or name or other things within the exam.  However, his memory and constructional abilities were intact. 
His exam did show something which I had suspected through the interview - that he did have a significant loss of hearing. This was both for higher frequency, as well as volume.   And, he was depressed, probably a reactive depression, given the lack of pleasure of doing activities that he’d previously found pleasurable, and rather, would just sit around the house, staring blankly at the tv.  Tony’s wife noted that she would try her hardest to get him to do things, to get him engaged, to motivate him.  But to no avail.
…And hearing
“I’m not sure you have dementia,” I told Tony, and his wife after his examination. 
“At least nothing classic as a dementia syndrome.  I think you’re more likely depressed, and that you have another issue - you’re hearing is affecting your life dramatically.  We need to address both of these.” 
Tony’s wife began articulating her efforts once again, and I held up my hand.  “I appreciate it but we need to rule out these causes before making any diagnosis.  That’s something we always do.”  Tony spoke up, asking what we needed to do next. 
“Well, minimally, I’d like audiology to see you, and the ear, nose and throat (ENT) doctors, and as well, psychiatry in order to assess all of these issues.  I’d also like to get some neuropsychometric testing, to evaluate your cognitive, or thinking, abilities, but only after you’ve seen everyone else first.  Once you’ve seen all of them, we can get together again and go over all the results together.  Tony nodded, and his wife, to my surprise, also just nodded.
A new day
Tony was seen by the hearing service, who fitted him with hearing aids, with the ENT doctors noted just presbyacusis, or being hard of hearing due to age.   The psychiatry service did feel that he was depressed, and started him on an antidepressant. 
After a few months, Tony and his wife came back to see me.  He was a changed person.  From being actively engaging with his wife, who was much less vocal, to seemingly brighter and more forthright, he greeted me heartily as I came into the exam room.  I told him he looked better, and he noted he felt a lot better. 
“He’s still forgetful,“ noted his wife, with a smile.  “But it’s selective.  Like when I want him to empty out the dryer.  Or take out the trash.  But other stuff he seems much more with it.  And he doesn’t ignore me as much anymore.” 
I asked Tony his thoughts.  “It was the hearing, I think, doc - I just wasn’t hearing things.  I didn’t think it was that bad, but the audiologist said it was - I was missing half the conversation most of the time.  And I didn’t even know it.” 
He’d started again volunteering at the high school and told the lead teacher about his hearing aids.  They even used this as a subject on safety on hearing for kids going into the trades.  In the end, I didn’t bother getting the neuropsychometric testing, since his examination was entirely normal.  I still see Tony since he wanted to be followed in Neurology, but he’s clearly better now. 
I was happy that I could appreciate what was going on with him and hear what he was telling me when we first got to know one another. 
No need for Dr. Google’s Aricept, after all.
<![CDATA[Mr. E:  Cognitive Bias]]>Fri, 05 Jan 2024 19:19:24 GMThttp://bliangmd.com/blog/mr-e-cognitive-bias​Unintended consequences of our thought processes. 
Mr. E.
Mr. E was referred to me from the internal medicine group because of seizures.  He’d had a long history of apparent epilepsy, followed by his local doctor initially at a health maintenance organization for some time, and then by our fee for service group once he’d changed jobs to become a finance manager for one of the local businesses.  He was young, in his late 20’s, and he noted to me that his seizure diagnosis had been from when he was about 5 years old, when he’d start getting facial twitching, and then felt that he’d lost some time.  Twice when he was young he’d noted that he’d wake up having wet the bed, and feeling sore all over.  His local doctor had diagnosed him with epilepsy, which was by report confirmed by EEG.  Although he’d not been followed by a neurologist, the last note from Internal Medicine was that the patient’s “longstanding epilepsy” wasn’t particularly well controlled, and since he was starting care with our group, seeing Neurology was a good next step.
Beginner mind
When I spoke with the patient, he noted that he’d had seizures for years, and he could name all of the seizure medications he’d been on - Dilantin, phenobarbital, primidone, Tegretol, Depakote etc etc - but they only helped a little bit.  He noted to me that he was getting the seizures weekly, maybe because sleep was less due to a 6-week-old at home, and that he’d learned to “hide” them, so that only the most observant persons from his family could tell what was going on.  This was, to say the least, not what I expected to hear, and we spoke further about the details of his spells.  “Well, doctor, it’s like this.  I know something is going to happen, maybe that morning.  A few hours later, my face starts to tingle, and on the right I feel like my face is twitching.  Sometimes I ask people if they can see it, like my wife; she says at times she can, but I can feel it all the time.  My vision gets all blurry, and my head fogs.  Then I get a real bad headache, like someone is pounding my head with a sledgehammer.  I gotta go lie down.  Sometimes I throw up.”  I asked Mr. E whether he’d lost consciousness, and he noted that no, he hadn’t as far as he knew, since he was a kid.  And how long would these episodes last?  “Twenty, thirty minutes - but the headache lasts all damn day, doc.  I gotta go lie down in a dark room.”  Any loss of bladder contents recently?  “Nah, not since I was a kid.”  Apparently, his former doctors had put the patient on valium if he’d experienced the spell, and the patient noted he didn’t take it anymore, since he was a “robot” through the next day with it.  “So, what do you do, then?” I asked, trying to remain open minded.  “Sleep, make sure I take my anti-seizure medication, and that’s about it.”
Thinking, and not thinking
There are many manifestations of seizures, and many types of seizures that we see as neurologists.  As well, there is a relationship between epilepsy and migraine headaches.  From Mr. E’s description, it sounded more like he was experiencing migraines, rather than epileptic seizures.  While having a seizure could evoke a headache, the pattern the patient was describing really didn’t fit this particularly well, and in fact, again was associated with migraines.  When asked about the blurry vision, the patient noted that it was like wavy lines were in his eyes, and the queries about ice cream headaches and motion sickness were also acknowledged – he’d had both since a chjild.  I told the patient that I wasn’t sure that he was suffering from epilepsy, but that I thought that migraines were more likely the cause.  “But all my doctors have said it’s been seizures; I’ve had them since I was a kid,” said the patient.  “Although none of these medications seem to work very well.  And my brother - he’s a colon surgeon, he wanted me to see you since he wasn’t sure these were seizures either.  But he said he didn’t know.”  I told the patient that some of the epilepsy drugs we do indeed use for migraines, but not really the ones he’d used in the past, and even more recently.  “I think we should put you on a regular migraine medication,” I concluded, ‘since you’re having these headaches relatively frequently.  And we can give you a migraine rescue medication as well.”  
Understandable doubt
The patient was momentarily silent.  “Ok, I think that’s ok.  But I’ve never been off my seizure medications before.  Is that going to be alright?”  I assured the patient it would be, but that he still shouldn’t be driving, which he knew not to do.  The patient was started on the medications, and when I saw him again in two months, he was smiling, and had brought along his wife.  “At first, I did have a couple of the face twitches, and I took that medicine you gave me,” said the patient.  “I didn’t get the headache like before - just a bit of a dull ache. But I haven’t even had that in a month.  It’s fantastic.”  The patient’s wife noted that, “He’s even been able to get up with the baby as well,” noting they’d been sensitive to sleep for the patient because of these spells.  I was also obviously happy for the patient and his wife, and then the patient noted to me that he'd found the EEG report at his parent’s house.  When he showed it to me, I wasn't surprised to see that it was noted the pattern was consistent with Rolandic epilepsy, which can start in early childhood, but typically goes away at puberty.  So it was most likely that while Mr. E did indeed have childhood epilepsy, it was the type that went away.  Mr. E was speechless.  But then said thoughtfully, “Ya know, it’s weird.  I’ve been told that I’ve always had seizures.  It’s like a part of me.  But now...I don’t.  I need to wrap my head around that.”  His wife noted that it was better than the reverse.  Nonetheless, I knew what the patient was saying - while a relief, it was almost like a loss. But I hoped that he’d get through it alright, which is what I told him.  
Cognitive bias
In the back of my mind, I was thinking he’d been tagged with a diagnosis of epilepsy for so long, and it was just promulgated throughout his history.  We doctors had just continued to label the patient with a diagnosis and attribute his symptoms to something that we already knew was in his chart.  I know this is something that occurs all the time, not only in medicine, obviously, but it has great ramifications in our field, given that it can create unneeded treatments or inappropriate medications for patients.  It’s why I like to have other services involved in a patient’s care since we’re better at assessing things independently, to avoid our own biases. 
Mr. E once again makes me remember that we always need to listen to the patient who’s trying to tell us what they're suffering from - and to be aware of our own cognitive biases for the benefit of the persons sitting in our exam rooms.
<![CDATA[Ms. M:  An Educated Consumer]]>Wed, 27 Dec 2023 23:13:53 GMThttp://bliangmd.com/blog/ms-m-an-educated-consumer​Ms. M
Ms. M was 67 years old when I first met her in my general Neurology clinic.  She’d been evaluated by a number of different hospitals and medical centers in the past, given her 30+ year history of multiple sclerosis, or MS.  As she relayed to me, she’d been initially like many other MS patients, with a relapsing and remitting course, which had gone on for about 10 years, and which she’d tried a number of different medications.  She’d actually had done quite well during those years and had continued to raise a family and been quite productive balancing a professional life as well, with only mild exacerbations of the disease. 
Clinical changes
However, after that, her course turned much more intense, and she’d moved from being a relapsing remitting course to a chronically progressive one, where she was losing function and not getting better after each neurologic setback.  “I tried everything the doctors had to offer,” Ms. M told me.  “I even volunteered for experimental therapies and was in a couple of clinical trials.”  She had also been quite involved in the local MS society and had a very sophisticated understanding of the newest medications on the market.  “It's so frustrating,” said the patient.  “All these things take so long to get through the FDA after the clinical trials.  Why can’t we try things if we as patients are willing to?  Does the government know better about how safe these medications really are?  Sometimes we don’t know for years if a medication actually turns out not safe.”  I didn’t say alot, although certainly there was part of me that agreed with her.  But she was uniquely informed, and not everyone is.  
A Wealth of information
Ms. M had just come back from an evaluation from one of the most well-known academic centers for MS in the country, and they had suggested she be treated with a specific medication that had been approved by the FDA recently.  Ms. M was well-aware of the medication, and actually described to me the benefits of the medication, as well as the issues with safety that had come up during the trials that had been performed.  I was prepared to allow for the transfer of care of her case to that academic center, when the patient surprised me, saying “But I decided I really don’t want to have that therapy. All the tests I have to go through, all the travel back and forth and being away from home.  I just want to be treated here, where I have the support of my family and friends.  And I think the best drug for me is the one that was approved last year.”  
Courage of convictions
I was a bit taken aback with Ms. M’s clinical plan.  I had assumed, given her knowledge of her disease, the therapies available for it, and that she had sought out the best physicians and centers that she’d be taking advantage of all of it to create the treatment plan she wanted.  And I told her this.  “Well, Doctor,” said Ms. M, looking at me intently.  “I know the therapy that I want isn’t for people my age.  And that there’s a chance I might die because of it.  But you know what?  I’m not afraid of dying.  Of course, I don’t want to die.  But I’ve heard great things about this therapy.  And I know and trust you all here, and my support is here.  It just seems right in the end.”  I acknowledged the comment, and she continued.  “The fact is, it’s about going for it, you know?  I don’t want to live not knowing I didn't do what I thought would be the best thing to treat my disease.  Even if I die from it.”  All I could think of was how courageous Ms. M was, and how hard she had worked to investigate the available therapies for the disease.  As well, she knew the data - she was cognizant of the pro’s and con’s of the disease.  This wasn’t, what has been such the catchword, of patient “shared decision making”, which frankly has been what we doctors have been doing for decades.  This was an occasion of patient decision making, no sharing from my end at all.  Except, I had to agree to prescribe the medication, which I had not agreed to do, as of yet.
Making a decision
“Ms. M, you know all of the potential side effects, better than I do, of both the therapy from the other hospital, as well as the one you want. Are you sure this is really what you want?  There are all sorts of warnings about this medication that you’re so adamant about.”  
“I know the side effects, I know the issues, and I know that given my secondary progressive MS, this has the most data around benefit out there.  And even you admit I’m a young 67,” and smiled.  To that, she was right; I had said that when I first met her.  I asked what her family thought, and she noted that, as usual, this was her decision.  Her family had also noted that she knew more about this than anyone else, and other patients sought out Ms. M for her thoughts on their therapy.  “I never say I’m a doctor, just that I know the results of studies,” said the patient.  “That’s all I tell people; the results.  They have to make decisions for themselves.”
An educated consumer
“You know what you want,” I said, as I signed off on some of Ms. M’s paperwork.  “I’ll prescribe and arrange for you to get the treatment that you want.  You know the risks.  But you also know the data better than any else that at least I know.”  The patient thanked me, and we arranged for her to receive the therapy at one of the nearby hospitals.  I actually had to transfer her care to another neurologist who could actively monitor her at the other facility, which was more convenient for the patient.  The last I heard, she was tolerating the treatment well.  Whether she would get better with it was anyone’s guess, and it would take months or even longer potentially to figure that out. 
But it brought to mind the quote from a clothing store from the east that I used to hear, which still rings true to me in many ways, and certainly with respect to Ms. M:  An educated consumer is our best customer. 
For Ms. M, this certainly was the case, indeed.