Last week I saw my Pulmonologist. Although I was nervous after recent events that he would have doubts about me I was pleasantly surprised to find him just as warm as ever and I think in fact that his learning of the ER debacle only cemented our bond further. Much as these cliquish people would like to see all my doctor/patient relationships destroyed they are not getting their wish. My pulmonologist was hoping I would have already gotten in to Dr. G’s clinic by now, and was appalled at what had happened to me at the ER in December.
This is the one doctor who the evil Dr. M. and his group of bullies cannot screw around, intimidate, nor manipulate, as he is very meticulous about his documentation and he backs up his diagnoses with good, hard data. He is not arrogant (which is nice), but he has the courage of his convictions and is genuinely a good guy who really wants to help his patients. I told him I figure my chances now of ever getting into Dr. G’s clinic are most likely blown due to the actions of those ER doctors and their libelous statements. He said he was not so sure about that. Seriously, I could just hug him right now!
He is the one doctor whom none of the 4 person wrecking crew tried to attack; they knew that if they dared try challenge his work that he would mop the floor with them, as his positions are backed up by 3 sleep studies and he’s pretty iron-clad.
What they didn’t realize is that Dr. T., who is a perfectly good neurologist (but works in the Sleep Lab) looked at those sleep study tapes in order to diagnose my Myoclonus. She, unlike Dr. M., does have a background in Movement Disorders and it was not hard for her to diagnose by seeing the movements in action. Dr. M. and Dr. T.T.J. (neither of which have published in medical journals had arrogantly decided to disregard Dr. T’s diagnosis based on the gross tests done at Piedmont Hospital. I guess they underestimated her. She has published on sleep disorders as early indicators of neurological disease, by the way.
Nice try, dufuses, but it’s not always due to a structural lesion. It can be neurochemical or electrical in origin and still be very real.
Sometimes doctors in the ER really make fools of themselves when they think they know everything.
My Myoclonus continues to this day (and not only upon falling asleep, although mostly. It also manifests in my shoulders when I get too cold), and it has responded to Keppra at 1000 Mgs./day, reducing the severity and how long it goes on quite a bit. It was Dr. T. who put me on it, and Dr. W. (the admitting neurologist at Piedmont) who increased the dosage to an optimum level. Although it’s not a cure, the fact that it vastly reduces it tells us that the drug is acting on some pathway in the brain. It is highly unlikely to be placebo effect or chances are by now I would be back to being kept awake until 7 AM each night. Thankfully I am not.
It’s been more than disappointing; the non-advocacy provided by Emory’s “Patient Advocate”, T. J., who showed her obvious bias after only our second phone conversation, and still has not answered my questions entirely regarding whom she asked what during her mickey mouse investigation, but I believe that eventually I will be vindicated and those who sought to discredit me and sabotage my healthcare will suffer the consequences of their malicious actions, and so will she for being so dismissive of my very legitimate grievance.
I have had shortness of breath on and off throughout the appearance of these neuromuscular symptoms which seems to come in clusters and then I don’t have it for a few weeks or months, but then it comes back. I’ve had it several times over the past few weeks, and again tonight while sitting upright.
Tomorrow morning I go for some pulmonary function tests which will likely add some more data which will help flesh out my condition further. Dr. M. and his bunch of groupies are probably not capable of understanding the significance this has in neurological disease or at best have a very basic understanding of it, but I’m pretty certain it will completely escape them as it applies to a condition as complex as mine. If they are reading this post I will leave them to vex over it all night.
On Friday I will go into the Lion’s Den (the dreaded Emory General Neurology Department) where I have an appointment with one of their neurologists I’ve never met. I was going to cancel it, as this woman has no reviews online (good or bad), and I don’t like going in blind after what happened, but on second thought figured even though it could be a trap given Macdonald’s connection with the department head, there are ways in which it could actually end up being helpful. (I won’t elaborate on that just now as I don’t want to show my hand to certain people who may not have the best of intentions). I will see what this woman is about and go from there. I just hope she’s not sneaky like Dr. H. and hope she’s not rude or a cold fish. My trust has been violated so I will not be so quick to believe her words and intentions as I might have been before the traumatic event happened. She will no doubt have to earn my trust. First hint of deceptiveness or working against me and she’s history.
Mayo Clinic is a no-go. After my initial inquiry at the particular location I checked on it turns out that they have nothing available until next January and so any patients with conditions of a neurological nature are not being booked at all right now.
My GP is finally coming to terms with my Dysautonomia after he received the erratic BP readings from my Piedmont records (which weren’t initially included, but housed in another department), and realizes that I am probably not going to feel any better until it is treated with IV saline infusion. Home healthcare is willing to send a nurse out to do the infusions but in order to prevent infection on an outpatient basis a port (central line) will need to be put in my chest; a minor surgical procedure. Although this is not a cure it should help me feel better and get my autonomic nervous system to work more efficiently, as it did in the hospital.
Right now I have no energy, my pain has gotten more frequent and intense, I’ve felt faint more often lately, my constipation is still an ongoing problem despite being put on Linzess, it’s a struggle to hold myself up against gravity, and I feel as though I need to sleep 15 hours for every 1 hour of being up even to go to a doctor’s appointment. I just feel crappy all the way around. Increasing my salt intake and drinking ice water constantly has not been cutting it and each morning I wake up feeling so dehydrated I can hardly tolerate it. Ravenously thirsty, and as if my kidneys are toxic; head-achy and back and core achy.
As of yet the order has not been written, but he has agreed to it, so I think now it’s just a matter of when it will be written, as he knows I can’t go on like this forever. It is taking alot out of me just sitting up long enough to write this post. If it’s the wrecking crew he’s afraid of then screw them in the bootie, I say! The treatment options I pursue are my choice. Every patient should have the ultimate say as to what is and isn’t done with their own body.
There really needs to be a new Patients’ Bill of Rights drafted to address these types of issues. I’m sure there are many others who are going through similar struggles as I am. I’m going to be voting for Bernie Sanders in the upcoming Presidential election as I believe he most closely exemplifies the principles I stand for surrounding healthcare. I have written the Dept. of Health and Human Services periodically to bring some of these issues to their attention as they impact patient self-determination in ones healthcare.
To give input on healthcare topics important to you, write or call them toll free;
U.S. Department of Health & Human Services 200 Independence Avenue, S.W. Washington, D.C. 20201 Toll Free Call Center: 1-877-696-6775
The current Secretary is Silvia Mathews Burwell
If your healthcare rights have been violated, in addition to filing internal grievances with the facility, state facility regulatory agencies, and if the offender was a doctor, the state Composite Medical Board (as I did), you can file a Federal grievance through the Office for Civil Rights . I may consider doing this if the hospital continues to leave the libelous charting up on their electronic records system posing as “professional opinion”.
There are several online forms broken down by type of complaint such as HIPPA, Patient Safety/Confidentiality, and Assurance of Compliance
I had an interesting discussion on Youtube with a medical resident, and as you know if you’ve been following my blog regularly I am very interested in opening the minds of new doctors just getting their feet wet in the field of neurology. This guy was educated in the typical way most neurology residents are taught and after viewing a woman’s video who was having facial spasms while she was watching TV he posted that he thought her disorder was “functional”.
The model used currently to differentiate “functional” from organic neurological disease/disorder is usually to check whether;
1) symptom patterns coincide with known patterns associated with “organic” neurological diseases/disorders.
2) a presenting symptom or group of symptoms stops during a period of distraction, thus appearing inconsistent.
(Keep in mind that distraction tricks are often used by patients with established Dystonia not considered “functional” such as touching the area involved or nearby which have the same effect of disrupting faulty brain signals and often do stop the symptoms temporarily).
I responded back that such a mindset does a real disservice to patients and often stands in the way of early detection and treatment of a neurological disorder.
He posited to me that there is a real category of Somatoform Disorders at the same time acknowledging neither Psychiatry nor Neurology wants to deal with those, but likens the stigma to that of diseases such as Major Depression or Bipolar Disorder. This was my response to that statement of his;
“Your second sentence spells out what makes it different from Major Depression or Bi-polar disorder. Psychiatrists don’t brush off those two conditions and they don’t confuse those with “feigning”. A functional diagnosis is way more stigmatizing because unlike the two mood disorders you used as examples they don’t believe functional diagnoses have a biological basis. There are imaging studies and neurotransmitter studies pointing to an underlying neurochemical basis for mood disorders, and now genetic research linking certain genes to them. The same has not been researched in those categories labeled as “functional”.
When you really think about it just about all the “mental” disorders are now thought to be brain diseases (AKA; neurologically based). That is exactly why psychiatrists prescribe medication for them. There was a time when Schizophrenia was believed to be behavioral and caused by bad parenting. As long as doctors treated it accordingly patients didn’t recover. It was only when enough research money was put into it to investigate its biological basis that advances were made and patients improved through more targeted medications. Dr. E. Fuller Torrey was instrumental in uncovering alot of the biology behind that disease. He continues to research now through a private research center and is finding out that the disease is not only characterized by a disordered Dopamine receptor system, but that there are intracellular pathogens involved in its cause which are not detected by commercial testing methods. While I must state that I disagree with Torrey’s focus on involuntary commitment of such patients, he was one of the first to hypothesize and quantify with research that Schizophrenia is in fact a true brain disease, removing it from the realm of “it’s all in the patient’s mind.”
I would bet that if enough research were put into studying what they call “functional disorders” scientists would find a biological/neurological basis for it. I’ve been reading lots of research papers and I think I have an idea what it really is. If you read some of the latest studies on Fibromyalgia and on Dystonia you’ll be very intrigued at what you’ll find. Apparently there are studies that have elucidated some very good data suggesting that these disorders involve faulty signals and neural pathways.
The same areas of the brain involved in emotions are activated in disorders such as Fibromyalgia, Chronic Fatigue Syndrome, and Dystonia as well as other disorders currently called “functional”. This doesn’t mean these are “mental illnesses” although people can experience mental symptoms (but not always). It merely means that the signals coming through those brain regions involving pain and/or movement are often impaired and become crossed with emotion-bearing pathways.
If you are going into either the field of Neurology or Psychiatry I hope you will dedicate yourself to these “gray area” diseases/disorders and look for these quantifiable markers. You can do that with PET, fMRI, and a number of other state-of-the-art imaging methods, as well as on a more micro level look for genetic and neurochemical markers involved. If you look and put in the time you will find them eventually (and maybe make a name for yourself in the process if you should publish your findings in established medical journals).
Taking on such an endeavor would go a long way toward doing justice to these patients with such orphan diseases/disorders and remove the stigma associated. I’m sure in time researchers will identify a physical basis, and targets will be found for which they can develop medications that really work (as long as doctors care enough and are unbiased enough to look and believe patients are worth it).
I really believe “mental” as opposed to “physical” illness is an old paradigm and that the future of science will bear that out as more research comes out. Think of a computer as a model for instance; no software can function properly in a computer if the hardware is dysfunctional.
Autism is a human model that illustrates this quite well. While you may or may not find any structural differences in the brain, it is known and pretty widely accepted that it is a difference in the way these people are “hard-wired”. It is listed in both the DSM and the ICD. Although it has “mental” or “behavioral” manifestations, it is not a “mental illness” per se, but a neurodevelopmental disorder. Autism is also associated with disordered brain signaling/processing of sensory input; same as the diseases/disorders I mentioned in my 4th paragraph. You will notice that many interventions recommended for autism are not covered by health insurance. This is a particular type of “othering” supported by insurance companies.
The same goes for delineating “Dental” from “Medical” for purposes of health coverage. Take a look at what some dentists are doing for people with movement disorders (for the most part private pay and unfortunately out of reach of many most in need who could really benefit). Look up Dr. Stack/Dr. Jeffrey Brown, Demerjian, and several others doing some very cutting edge work in that subspecialty.
In Dystonia, look up Juaquin Farias PhD. and his work in neuroplasticity. He is Director of the Neuroplastic Training Institute Toronto and adjunct professor at the University of Toronto at the Music and Health Research collaborative. He started out working only with focal dystonia in musical and performing artists, but now has had some success with Parkinson’s patients.
All of these things should be under the same umbrella as “physical”. The insurance industry has alot more of a stake in keeping these divides than most people realize because they can justify not covering them or charging higher premiums for them as add-on coverage. The way these things are structured and coded is often for their benefit, not the benefit of patients.
Follow the thread and see where it leads. I think you will be surprised that much of what you’ve been taught in medical school doesn’t line up with the latest research.”
So far he has not responded, but maybe that gave him food for thought and the idea will grow on him once he thinks more deeply about it later.
One very important point I forgot to make in my response to the neurology resident is that the woman watching TV was distracted and yet her facial movements continued anyway. This is definitely not consistent with a “functional” etiology, as watching TV is a very absorbing activity often causing a person to tune out all else going on in the environment. (I will add that point to the thread next chance I get).
Perhaps where doctors tend to misinterpret a patient’s symptoms as “functional”, especially in such disorders or diseases involving brain signaling/processing or in such cases in which a condition is caused by intracellular pathogens too small or evasive to be seen by most commercial imaging techniques is that one may have a disorder that involves faulty brain function yet it is not “functional” in the derogatory sense of the word, but is in fact truly neurological and can be quantified in ways other than structural.
In a study published in the medical journal Current Opinion in Neurology in August 2013, the hypothesis of authors, Mark J. Edwards , Aikaterini Fotopoulou , and Isabel Pareés is that attentional processes in the brain are most likely disordered.
An experiment using “Functional” Distonia patients versus familial Dystonia patients yielded the following results;
1) Both groups had increased bloodflow in the right dorsolateral prefrontal cortex to an abnormal degree
2) In the “Functional” Dystonia group bloodflow in the primary motor cortex was decreased and blood flow in basal ganglia and cerebellum increased.
3) The reverse pattern was found in the genetic Dystonia patients.
The big picture suggests that both groups of Dystonia patients have abnormal prefrontal involvement, but that those patients labeled “functional” may have additional abnormalities in frontosubcortical circuitry which regulates motor attention and likely surrounding limbic areas .
The authors of the research paper also hypothesize that certain movement patterns may become ingrained by a precipitating trigger (often physical in nature) which the brain erroneously associates with certain abnormal movements. Although this processed information is converted into abnormal movement it is not “hysterical conversion disorder” nor is it purposely initiated by the patient.
The article illustrates beautifully that what is often mistaken for a psychological phenomenon is actually a disorder of brain processing, encoding, and wiring!
So patients; next time you are told by a doctor “this is all in your mind” point him/her to this research (listed in the last link I’ve provided at the bottom), or better yet, print it out and hand it to the doctor.You are not crazy, and don’t let anyone tell you that you don’t have anything physically wrong! It is time that clinical practice caught up to the most up-to-date research and throw out the old outdated concept of “Hysterical conversion /Somataform disorders”. It is no longer relevant, and only adds insult to injury preventing or delaying your getting the real and compassionate healthcare to best treat your neurological condition.
And to doctors; Remove that discounting “Psychogenic” label from your mindset (and from your vocabulary). It’s not helpful to you in rendering effective treatment and it does nothing positive for the doctor/patient relationship (which is a necessary bond to maintain if you want to be of any real service to those you treat). If you value your reputation you must extend the same courtesy to that of your patients’ reputation. Do not chart things that invariably cause other doctors (who may ultimately have a pivotal role in your patients’ best outcome) to question your patients’ credibility. These patients’ lives are hard enough without this added burden which not only causes emotional distress but can also be quite costly to the patient financially to correct. It’s important to remember that those people in any field who’ve made the biggest strides were individuals who dared to challenge the status quo. Why be just an OK doctor, playing it safe following trails blazed for you by others when you can be a great doctor by blazing trails for those that come later! If you choose the latter your patients will thank you and you will have contributed something valuable to your specialty!
Upon returning home on the evening of November 28th I was greeted by the strong stench of dog feces and urine coming from the kitchen. I had been under the impression that my son’s girlfriend’s father had been keeping Carmella, my dog, in Athens at a local dog spa and that she was being well cared for. I found her with a small dish of cheap dogfood and what seemed to be a week’s worth of mess underneath the kitchen table. Near the garage door and laundry room was some bloody diarrhea that was nearly liquid.
Cleaning all this up while sitting in my wheelchair proved nearly impossible but I couldn’t just leave it there, so I did my best to stand and in doing so fell, almost landing in a puddle of urine. The smell was overpowering even after my best effort at cleaning, as the linoleum is porous unlike the type they used to make and absorbs like a sponge.
I was relieved to be home in my own bed, but the silence was deafening after the steady hum of conversation in the hallway at the hospital.
Sleeping was fitful and unrestorative between the residual odor emanating from the kitchen and my autonomic instability.
Wires got crossed and home health didn’t show up until sometime later the following week, as apparently they had not been notified by the hospital that I’d been discharged.
By Thursday, December 3rd I was in a bad way. The night had been one of the worst since I’d been discharged from Piedmont and I called the home health agency as soon as they were open to ask that they send a nurse out, as I was feeling really faint along with nausea and the feeling that I was going to lose all bowel control at any moment. The Care Coordinator, Daria wasn’t in and somebody else was working that day in her place, and I was told they couldn’t get a nurse to my house on such short notice. The best this woman could advise me to do was to go to the Emergency room. I really didn’t want to but didn’t know what else to do. The feeling was becoming intolerable and the woman on the other end of the phone was telling me I really should never have been discharged.
Reluctantly I dialed 911. Not long after, a black man and woman arrived. I was too ill even to get into my wheelchair so yelled for them to come in my back door. They finally heard me and entered the house that way.
I told them to take me to Emory since that was where my doctors worked, and I figured maybe I would give the place another chance even though their clinics had taken way too long to get me routed to the right care. I recounted how things had been moving at a snail’s pace, how surreal things had become on the Patient Portal with several doctors watching intently but none making a move to intervene, and how my GP had seemed at a loss, resorting to prayer now and saying very little.
The female paramedic seemed perplexed. “After that you want to go to Emory?”
“Yes, and don’t divert no matter what. Please hurry. I’m not feeling well at all” I responded.
I’d tried going to another hospital and they’d spat me back to Emory anyway, so I thought maybe it was best that I have them follow through. At least my doctors were there and the ER could let them know where I was. Maybe, I thought, this nightmare was finally coming to an end. Little did I know, things were about to get alot worse.
The male paramedic began proselytizing about Jesus Christ and asking if and how I were “saved”, very inappropriate, but nevertheless I told him that given nothing else was working I’d tried that too and that wasn’t anymore effective than anything else. He went on about how you had to ask forgiveness and pray this way or that way in order to “be healed”. I thought this really must be hell I was in as the female was driving as though it were a Sunday and stopping at each light. It seemed as though I’d stumbled onto an alternate reality, or down some strange rabbit hole. I could hardly believe this was happening. I felt as though I were going to hurl and crap my pants all at the same time as the two paramedics immersed in their own world talked about eating pizza.
After what felt like ages we arrived at Emory’s ER. They took their time getting the gurney out of the back of the truck and wheeled me into the entrance.
After signing some paperwork and having blood drawn through what felt like a dull shovel crammed into my arm (an IV) by a middle-aged black woman with shoulder-length hair began making conversation with me. Other than the painful IV she was pleasant and made some small-talk noticing I had a birthday coming up and asked what I wished for,
“A new body” I half-way joked.
“Be careful what you wish for”, she replied cryptically.
I quietly wondered why everything had to be assumed for the worst rather than for better.
Soon after she left, Dr. L.H. entered the room followed by a group of others. She was young with dark brown hair parted in the middle and an engaging personality. As the others milled around she positioned herself by the foot of my bed on the left side and asked what had been happening that brought me to the hospital. I struggled at first to get out the words but then they just sort of poured out of me, all the symptoms that had developed, how they accelerated recently, and how Emory seemed to be asleep at the wheel as I got more and more disabled until I could hardly care for myself anymore.
“I’m so sorry” she replied. “We’re going to take care of you. I promise. We’re going to make this right. If there’s anything you need, food, water, or anything, just ask.” Her expression looked sincere, so I believed her.
I asked to speak with the social worker but she wouldn’t be in until around 10:00 AM. The woman filling in at the home healthcare agency had told me to have their social worker call them so she could advocate for me. Someone had put my handbag out of reach, I don’t remember when, but I couldn’t get to my laptop or a phone to call anyone, and I was so tired and agonized by the lower GI symptoms I was experiencing it was hard to process all that was going on. I needed to believe things were going to work out finally. They had to. I didn’t know how much longer I could take it.
It was nearly 2:00 PM before I was able to get the social worker and I asked for some food and medication for spasticity. She went to ask on my behalf and after she left it was quite awhile before a young, slim black nurse walked in with a pill in a small cup. I asked if it was Tizanidine and she told me no, (giving me a generic name I did not recognize), then when asked told me that it was some sort of Benzodiazipine. I gave her a strange look and said I didn’t think that was an appropriate drug for my symptoms. She finally admitted it was Valium and I said, “No that that wasn’t going to address spasticity in my colon nor the spasticity I was having in the left instep of my foot.
She told me that I couldn’t get an antispasmodic because those were “neurological medications” and had to be authorized by a neurologist. I wasn’t buying it. Never had I had such an experience in any ER in my life and I had an inkling something strange was going on although I didn’t yet know quite what. I asked to speak with the patient representative and she instead got the social worker again, who while she was understanding and admitted that I wasn’t being treated correctly, seemed to feel that her hands were tied, and eventually trailed off in frustration.
The young nurse returned with the Valium and insisted it would address the spasticity as it had muscle relaxant properties. Too tired to put up much of a fight I took it as it was all that was available at the moment. It didn’t help and I was so miserable with the constant fecal urgency that I felt like crying but my eyes were dry and I couldn’t shed a tear. An almost primal wail came out of me for hours until I fell asleep in utter exhaustion. No food came even after I called the nurse several times. She came in and asked whether the Valium helped and I told her no, that all it had done was put me to sleep but the spasticity remained. I asked again for an antispasmodic. Again she refused. Putting her hand defiantly on one hip she waggled her head and shoulder to try to defend her position, stating that although it might have put me to sleep it was not for sleep and that it does address spasticity. I told her that if that were so that only would it do so indirectly and that there are better medications for that; Tizanidine or Baclofen.
She left the room in a huff rolling her eyes and didn’t return for some time. No food was forthcoming but after ringing the buzzer about 3 times over a period of an hour or so more I finally got some water from another nurse or aid.
Sometime in the late afternoon a female resident, E.G., came to my bedside. She had a very pale face with dark circles and deep set eyes, almost cadaver-like in appearance. At first she seemed cheerful as she told me she was doing her neurology rotation and somehow we got on the subject of my son (I can’t remember how), but I told her he had a D-Net tumor. She didn’t know what that was so I explained it was a benign clump of excess neural tissue that caused daily seizures, and said she would eventually learn that if she was planning on going into neurology. Then she took out her tools and decided she was going to do a neuro exam on me. This was where things started getting a little weird. At the time I really didn’t know what to make of it but she started testing my reflexes in the right arm saying “You know the drill, you know the drill”, in an almost cursory yet condescending way. I remember thinking I wish they’d leave me alone already and practice on somebody else so I could go to sleep.
Then almost immediately after she was through doing that, in came a male attending ER doctor, T.T.J., MD (internal medicine) a stocky man with wavy brown hair tied back in a small poneytail who did his own neuro exam. He was glib and dismissive and seemed quite pleased with himself and couldn’t seem to understand why my not being able to bathe myself and care for myself would be bothersome to me, writing off my concern as “anxiety”, and attributing my chronic long-term constipation to the Tramadol although I’ve had it alot longer than I’ve been on the medication. I told him directly that I wouldn’t be minimizing this if I were him.
After he’d left the room I spoke with the social worker again, telling her I didn’t feel that this guy was being respectful and asked her to speak with my home healthcare agency. Again I asked for something to eat. She said she’d pass it on. I told her that with all that was going on and all I’d been through I didn’t know who to trust anymore. She told me I could trust Dr. H.
Finally Dr. H. came back in and told me I was going to be admitted at least overnight to their bridge unit, and that a female neurologist was going to be assigned to me. As she leaned her elbows on the bars of the gurney she said “We do care about you.” I could believe that she did but the royal “We?”, not so much. I was a long way from feeling reassured. Fighting through the pain and fatigue I was trying to make sense of it all.
After she left the room I waited for the female neurologist she spoke of to arrive but she never did. To this day I do not know why.
When Dr. H. came back she told me there’d been a change of plans and that there was going to be a different neurologist seeing me instead, a male whom she described as “an old traditionalist”. Just then a precarious feeling came over me. That didn’t sound like a good thing. I asked her if he had a problem with a strong woman and she told me no, that she was a strong woman.
Soon a transporter came with a wheelchair to take me to the unit. Once I was assigned to a room a nurse came in and took my vital signs. My blood pressure was somewhat high. I asked her to help me plug in my laptop so that I could notify some people as to what was happening. Once she left I found I was unable to connect to the network.
Around 6 or 7 PM, the neurologist Dr. P.R.M entered my room at Emory Hospital wearing a surgical mask (which I thought was bizarre anyway), accompanied by the same female resident who had seen me earlier.
Instantly I had a visceral feeling of dread. He looked tightly wound, with a mostly bald but oddly muscular head. Clenching his jaw seemed to isolate one muscle in his head at a time tensing and releasing in a strange pattern. He reminded me of a snorting angry bull on a hair trigger pawing at the dirt. He neither smiled nor attempted any niceties in his introduction.
Almost immediately he asked me rhetorically if I would turn off my laptop, and then actually reached over and closed it himself before turning off the overhead light and looking closely into my eyes with his pen light.
Dr. H. came into the room to the right of my bed. Dr. M. asked me some pointed questions about what I understood about why I was there, and asked me my symptoms. I replied that I had been in the process of work-up for a neuromuscular disease, possibly ALS or some sort of movement disorder and told him I had progressive weakness, fasciculations, myoclonus, spasticity, extreme fatigue, and had fallen a number of times back in August, and had been declining more quickly over the past month or so. That day and for the past few weeks I’d been having dysautonomic symptoms; i.e., nausea, faintness, hot and cold temperature dysregulation, gastric upset and constant spasm in my lower GI tract that felt like I had to poop urgently all day long. I explained that I had also had sharp muscle spasms in the instep of my left foot earlier in the day.
When I used the proper names for my symptoms he made a rather pointed comment; “You know a lot of medical terms.” His tone sounded almost accusatory as though that threatened him in some way. I told him that there’s a whole new generation of patients out there who are highly educated and proactive, and that I was raised around science, as my father was a cell biologist, and since I tire easily I’d rather use 1 word to describe 4 or 5 as long as he and I both understand what it means. I explained that I do what I can to conserve my energy.
Then he physically abused me under the guise of a neuro exam (started off pretty rough but on the border) testing my reflexes on some areas of the legs and then on my right arm, but when he got to the left arm he lifted his triangular rubber hammer above his head and taking full swings beat me with all his might several times quickly. When I cringed and yelled “Ouch!” he did not apologize. I have had neuro exams many times before and never in my life had I been hit this hard by any doctor; neurologist or otherwise. There was no clinical reason for that amount of force. It was obvious that he intended to intimidate me and inflict pain in such a way that it would not leave a bruise, in the pretense of doing his job.
He had access to sensitive medical history information in my chart from a recent hospitalization at Piedmont hospital where I had been having tests and being worked up for ALS, admitted he’d read the whole thing, then lied to me that my EMG was completely clean when in fact it wasn’t, there were some findings not yet elucidated, and then proceeded to use other personal history information against me from the other hospital’s record about abuse I suffered as a child in a malicious way. He said “You had a mental health consult there, didn’t you. What did she tell you?” he again poked in a distinctly interrogative tone.
(I had merely spoken with a counselor about grief I was having about the loss of my function in the past few months). His motive was clearly to discredit the neuromuscular symptoms I’ve been having which have progressed to the level that I need help at home with daily living. I was in shock and disbelief that a total stranger would come into my hospital room so hell-bent to attack me this way, especially a doctor who was supposed to be there to help me, and I couldn’t understand why all the vehemence. I told him briefly that the counselor had told me that she didn’t feel I had a psychiatric problem and agreed with me that it was entirely situational, and said that it was understandable that I was overwhelmed considering what was happening to my body. (I understand they cannot bill for grief so have to put something diagnostic down). Dr. M. used this in a malicious way to try to discredit my whole disease process that was currently being worked up, and these were just gross tests, just the beginning of the diagnostic process.
His “professional opinion” (even after I had Babinski sign in both feet taken lying down and also with legs hanging over the side of the bed) was that I had “hysterical conversion disorder” and he told me that he had been “called in” (I don’t know by whom) for his “opinion” and therefore had to chart something about it.
I told him I don’t know how he could jump to such a conclusion and that he better think long and hard about that because this could bias other doctors and result in me not getting the real treatment that could help my disease whatever it is. I said just because that was his opinion didn’t make it true and that a specialist might find the cause of my symptoms and I did not want him to poison the well with this biased opinion.
I told him that there were well documented problems that indicated something neurologically wrong in the CNS such as Biot’s breathing, (similar to Cheynes-Stokes), and that my sleep studies were very abnormal (slow waves while awake, sleep myoclonus, etc.), and that many times I am awakened by fasciculations in my toes, and how on earth could my mind conjure up that when I was not even awake at the onset. He paused for a moment unable to counter that argument.
It was quite clear by then he had his own agenda and did not have my best interest at heart, and what he did violates the Hippocratic Oath on a number of levels. He got defensive when I stood up for myself and told me, “Ms. Carlington, if you don’t want to discuss it there is no point continuing the conversation”. I reminded him once more that I did not want even a hint of this in my records. I told him that if he wanted to put in that he didn’t find anything that was one thing, but to enter such conjecture as he was proposing would be irresponsible. Pretty much everyone in the medical field knows what a stigma such a diagnosis holds and how damaging it can be to one’s credibility. When he shook my hand toward the end of the conversation it was a “dead fish” handshake and there was not an ounce of empathy in his demeanor. I told him “I don’t mean to offend you” but no thanks. This was not helpful.
He said there were no other tests he could think of to do and said that the neuromuscular specialist, Dr. G. didn’t come to the hospital, so I might as well be discharged, and said he’d refer me to him if I wanted. I said why not call in other specialists in the meantime and he asked me what specialists could be called in. I was exhausted and had been in the ER since morning with nothing to eat all day and no medication but a Valium to treat my spasticity so needless to say it didn’t occur to me to ask about a gastroenterology consult, but that shouldn’t have been incumbent upon me to initiate.
Just a few minutes later, he sent his female resident, E.G. into my room, upon which she plopped her butt down squarely on my left foot covered by my blankets which was the one with the most weakness and dysfunction in it. The toes were pointing up, so that could have broken some bones if the muscles hadn’t been as weak as they are at the point between the foot and ankle and it flattened down. Again I yelled “Ouch!” as I do have sensation in it, so of course it hurt. She apologized as though it were an accident. There was a chair on the other side of my bed she could have sat in instead. It was not necessary to sit at the foot of my bed. This is a little known trick to see if you’re “faking it” but is considered highly unethical. This is NOT what residents are supposed to be taught as acceptable practice and places patients at risk of injury.
She made a few statements that I didn’t process because of the state of shock I was in. All I could think to do was to ask her to get Dr. H., but once she’d left the room and Dr. H. came back in I couldn’t bring myself to tell her what the resident had done because even though I felt as though we might even have been friends if we’d met under different circumstances the events of the day had happened on her watch and she hadn’t intervened, so as much as I wanted to I didn’t even know whether I could trust her 100%.
She sat in the chair opposite me, and looking back at her my eyes welled up with tears that wouldn’t fall. I was so tired, so existentially tired. I told her this made me sad, that this experience had seriously damaged my trust in Emory and in doctors, that I thought she was going to make it right, not make it worse. I told her that he was wrong and that I had nothing at all to gain, but everything to lose, that I had lost the one thing I valued most in myself all my life; my physical strength.
She told me that she believed me and saw me as an honest person of integrity, and that I should continue to pursue the source of these symptoms.
I told her that it was so unfair for him to imply that a patient was either faking or nuts just because he didn’t know the answer and I recounted the true story of a woman with chronic Lyme disease whose family wouldn’t believe her and was too poor to get treatment from the right specialists, that she’d begged for someone to help her get the treatment she needed. It never came, and the day after posting a video about her plight she walked in front of a train and committed suicide, and that I’d spoken with one of my doctors about what I wanted to be done if my suffering were to become unbearable with no relief in sight.
She responded that if I ever got to that point to come back to the ER.
“But then I’d have a record”. And anyway, why would I do that if I’d reached such a point that I wanted out? Just to be forced to endure that suffering longer? No, I thought. If I ever get to that point I will make the final decision with dignity. What I’d just endured was not dignity but humiliation and degradation. The whole point of Euthanasia is to end the suffering, not to prolong it.
Yes, that’s true,” she answered, knowing that my having a “mental health” record was what he wanted and I would never give him the satisfaction.
I have an advocacy background (also documented in those records he used against me), so I’m able to recognize the signs of abuse and/or neglect when I encounter them, and what happened that day was highly unethical and out-and-out abusive.
When dinner finally came that night I couldn’t eat.
I had to call out to get the nurse because M had moved the call button to the countertop where I couldn’t reach it. The nurse came in and found it, shaking her head asking how it got over there.
“It was that damned neurologist”, I answered.
As I was given my discharge papers she started to hand me another Valium. I waved it away telling her I tried it earlier in the day and it didn’t help. Then she was going to hand me a prescription and I told her to keep it, as it was pointless. I would just take my Tizanidine when I got home later. I’m not sure why she was so intent on giving it to me; because she believed his take on things, or whether she thought after dealing with him and his abuse I was going to need a tranquilizer. Either way, I felt I was on plenty of medication already and didn’t need one more. Besides, there was no need to add to the stigma he was trying to make stick.
This sadistic man is not only a danger to me physically and to my relationships with other doctors on whom my life may depend, but also a danger to other patients as well.
When I obtained the ER record of his documentation almost a week later it was even worse than he had implied. This went way beyond rudeness or mere difference of opinion, but rose (or should I say sank) to the level of harassment and sabotage. He went way beyond the scope of his specialty and peppered it with psychiatric terms he had no business using that were the most stigmatizing mental health diagnoses he could think of, knowing that Emory doesn’t remove inaccurate, even libelous information but only puts a notation by it stating it’s incorrect. I will be utilizing their form for this, but, as his defamatory narrative will still be visible, and could bias other doctors, in perpetuity, this cannot be allowed to stand.
In addition, he went so far as to question in the report the diagnostic process used by my other doctors who had diagnosed Sleep Myoclonus and Sarcoidosis and he implied it was all fake.
He did nothing that would be beneficial to me as a patient, and his involvement was clearly designed to blacklist me from every doctor but those he had connections with in an attempt to manipulate me into confirming his “assessment”. He had gone too far by beating me under the guise of his “neuro exam” even though he’d admitted that he’d already formed his opinion prior to that based on the records from Piedmont hospital, and realized that I was not the easy victim he thought, so he tried to cover his behind by doing all that libelous charting as he exited.
I have filed the various complaints that I’ve been advised to file given the types of improprieties that happened, one of them a police report with Dekalb County, GA.
As long as he has full privileges at Emory he can tamper with my treatment, he knows where I live, and could possibly also endanger my son and his treatment whom is waiting for surgery for a D-Net tumor. That electronic records system states every appointment within the system I have scheduled, its time, and location, so I am in danger of further harassment and tampering with my treatment by him. He has shown his intentions to try to do that in that ER report.
This rogue neurologist should have his license permanently revoked as he has clearly shown malicious intent toward a patient, (at least towards me, and maybe others), he abused his position and power differential in order to physically assault me in the process of his “work”, and followed that up by essentially attempting to blacklist me with other doctors now and in the future, something that may have life-long ramifications and fundamentally hurt or destroy healthy and beneficial doctor/patient relationships. If he would do this to me then it is reasonable to suspect he would place other patients at great risk in this way.
Who exactly is this dark man, and who sent him?
To what extent did he influence (and possibly orchestrate) the way I was treated in the ER earlier in the day?