The doctor, the guardian of human health was always a somewhat magical figure possessing knowledge about our own bodies. The medicine men of tribal societies were often treated as mystical beings and to some extent that continues today. I, like many others, grew up believing that doctors are those that one visits when a malady reaches a bothersome point and a medical intervention is required. This is typically addressed by a primary care physician or PCP. That type of doctor is well rounded in their understanding but usually not a specialist in anything. This is but the tip of the iceberg of medical approach. When a malady beyond the PCP’s understanding is presented, a referral to a physician in the particular field is made. One would think that that field operative would offer their impressions to the PCP and together they would try to help the patient, but it does not work that way. For many PCPs, sending a patient to a field operative is, in essence, removing the patient out from their sphere. The field operatives vary as well and are eager themselves to move a patient along. Chronic, severe illnesses present a conflict for the physician as it is rare that anyone wants to approach an illness on their own, so they side with accepted approaches regardless of the human being sitting in front of them. In fact, one is no longer a human being, one is the illness that the field operative diagnosed.
So what of help? Isn’t the role of a doctor to help? Poorly understood conditions do not waive the mandate of a doctor to utilize their knowledge to help even if they cannot cure but that was not the case in my experience and as I speak to more and more people, it was not in theirs either. The frequently cited “do no harm” aspect of the Hippocratic Oath is used as protection of the doctor but really, the rest of the oath is rarely mentioned. For the sake of enlightenment here is the “modern version”:
I swear to fulfill, to the best of my ability and judgment, this covenant:
I will respect the hard-won scientific gains of those physicians in whose steps I walk, and gladly share such knowledge as is mine with those who are to follow.
I will apply, for the benefit of the sick, all measures [that] are required, avoiding those twin traps of overtreatment and therapeutic nihilism.
I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon’s knife or the chemist’s drug.
I will not be ashamed to say “I know not,” nor will I fail to call in my colleagues when the skills of another are needed for a patient’s recovery.
I will respect the privacy of my patients, for their problems are not disclosed to me that the world may know. Most especially must I tread with care in matters of life and death. If it is given to me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play at God.
I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person’s family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick.
I will prevent disease whenever I can, for prevention is preferable to cure.
I will remember that I remain a member of society, with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.
If I do not violate this oath, may I enjoy life and art, respected while I live and remembered with affection thereafter. May I always act so as to preserve the finest traditions of my calling and may I long experience the joy of healing those who seek my help.
Of course much of the blame for medicine can be placed on capitalism and the pursuit of ‘science’ regardless of the patient. Let us be clear, to continue research the object of research must remain. Thus, those with chronic, poorly understood diseases are likely not to get real help. Many conditions have drugs, yet in many cases the drugs do not work well, if at all, since the disease itself is poorly understood.
The following are my notes of the various ‘doctors’ that I have encountered. I refuse to see a neurologist ever again based on these experiences. The physical condition is bad enough, but the emotional and existential destruction was indeed delivered by people with letters after their names. These people placed as guardians to protect patients from conditions such as this or at the very least to do whatever they could to help appear to be more focused on the protection of the disease from the patient. The disease was claimed and the patient is just a carrier who is now expected to give up their sense of autonomy for these people to play with their disease. Patients come and go, this mystery illness has been around for 150 years and contrary to what has been purported, little has changed.
After a very troubling visit with my, then, primary care physician, I was handed off to a neurologist to unload the burden. I drove to the building with the erect bell tower, parked my car and walked inside. The office had a small waiting room with nobody waiting, but the sliding window opened and I was greeted by a girl with facial piercings that was probably no older than I was. A clipboard full of paper work was handed to me and I sat down to fill it out. I was soon invited to come behind the locked door to sit in the examination room and wait for the doctor.
What was he doing I wondered, I am the first patient. After a few minutes of playing with the medical office props an Indian man in a white lab coat walked into the room, shook my hand and sat down lazily on one of the chairs reserved for people accompanying patients. Of course I, as the patient, got the prime spot on the paper covered examination table. The man asked, “what seems to be the problem?” He was sitting very low with his legs stretched out, practically yawning. I took a breath, “I noticed that I get very tired walking. As though I am dragging my legs. I can walk for about an hour and then… It seems to be worse on the left side.” He listened and then, with his hammer in hand, approached me. He tapped the spot under my knee with his hammer, my leg jerked, he said nothing and moved to the other leg which jerked even higher.
Taking the other side of his hammer, he dragged it up the sole of my bare foot. I watched my big toe curl up thinking that it was just a ticklish response and his unremarkable face did not elevate my concern. A tuning fork was the next instrument that he hit against his hand and placed on my foot, I could not feel it vibrate. At this point I began to wonder what was wrong with me. He then asked me to stand up and close my eyes, holding me above the elbow he said “don’t worry, I got you.” He already expected me to have difficulty but said nothing. I was not worried but wondered what this, seemingly intelligent, man though about my peculiar symptom. He said nothing. I thanked him and asked what he thought it was. “MS,” he said while writing scripts. Thinking that it was a joke I did not worry and told him that I was on holiday and had to go back to Europe. He looked at me, almost lighting up in joy, “that is ok, do not neglect this, do the scans and take them to a neurologist there. If you cannot do both scans, do the brain.” I looked at the scripts, MRI brain, MRI T-Spine. Hmm, what does this mean? The tattooed girl with a piercing in her nose, searched through all the imaging ads they had. She wanted to find a good location with cheapest rate for me. She found a few among the hundreds of ads they had and made copies for me. I thanked her and left with the scripts in my pocket and ads in my hand.
About a decade earlier I saw an episode of Montel Williams show dedicated to MS that made me feel so sorry for those poor people suffering with this devastating, poorly understood disease. How does one get such a disease? Life is all based on luck and any kind of measure of hard work and perseverance can only, really, be judged after the basic charms of luck are met. Thus, these people were simply unlucky or damned through no fault of their own. They had no knowledge of the cause, they had no hope.
I remember hearing that “we are closer to the cure,” a sigh of the hopeless creature. Truth is that all the ‘experts’ were never going to find a cure, the goal was to just keep harvesting new, often absurd, ideas and continue to research. I knew none of this yet and at that point, given his calm demeanor, I thought that it is not the same anymore.
This doctor told me nothing. It was like having the flu but instead of any medications I received imaging scripts. Why? Just to prove what he was already sure about. Why? So he can put me on drugs. But what was wrong with me I did not know, what the drugs were I was not told, the prognosis was never discussed. No immediate help was given.
Neurologist recommended as being on top of his field was the next one. This man was more of a psychiatrist but claimed to be a neurologist as well. His office was a beautiful arrangement of Scandinavian-esq cherry wood wall unit, cabinets and his large desk that had a greenish frosted glass top. He had a few books and a computer. The familiar DSM IV was on the shelf along with other questionable literature that I had studied during my education in philosophy. After speaking to us in which he heard nothing that I said he performed his neurological exam with the same results that seemed to excite him. I knew then that I was most likely not getting out of this. He looked at the MRI scans, that I had already done, by holding them up to the office window. A man so wise, with arrogance soothing out of him, produced a few grunts. “Nothing is enhancing,” he said as he looked at one after another of the films I brought. “So, what does that mean?” I asked. ” It means that the plaques are not active,” he said and put the films back into their envelope.
He proceeded to perform the neurological exam again in a way as though he was showing off. He pulled a pencil out of his pencil cup and broke it in half gliding the broken end along my leg to establish if there was feeling. He hit my knees with his hammer and watched me walk along the corridor. His arrogance produced a vapor in front of him like the smell of a fresh turd and the phony smile made me nervous. “You have to contact [well known specialist] but before you do…” he wrote out several scripts for additional scan of C-Spine and blood work for all sorts of conditions including three types of HIV. “I am pretty sure of what the diagnosis is but we have to be careful and rule everything else out.” OK.
He leaned back in his over-sized executive chair and made it known that he was now ready for question/answer time. He was quite certain of the diagnosis so he took it upon himself to explain all the available medications. So, it does not help symptoms. What does it do? “Ideally it slows down the progression.” But what about side-effects? “There are many listed but my patients tolerate […] well.” Ok. I was damned and he looked at me as such, my life was over but he did not feel terribly concerned. Really upon retrospect it was not until the discovery and subsequent meetings with surgeons that I saw a concerned face on a doctor. Neurologists primarily deal with incurable diseases, some are treatable but not curable. I suppose that after all the patients this “doctor” had seen, sensitivity had dropped to zero, maybe it was never there. To me of course the situation was utterly different.
MRI facilities have a code of not saying anything to the patient, furthermore the radiologist report of the scans is only sent to the prescribing physician. I had become exceptionally well versed in the jargon and even in image analysis since but at that time I anxiously awaited Dr. G’s assessment of the received report. On the day after I was at the General Practitioner’s office getting the blood tests done when I received a panic call from this neurologist stating that I immediately need to check into the hospital to receive IV of ACTH, “well, maybe steroids will work,” he added. My GP was already running around the office in a frenzy stirred by this man and wrote the hospital orders for me. He called this neurologist and the man said that there is an edema in my Cervical Spine . Incidentally, the first thing this aged GP on the path to retirement checked was the pulse in my cold feet. How close to the truth he was I only know now but regardless I now had orders to go to the hospital and receive IV of one shit or another.
I returned to the office of the wise “doctor” with my films, he walked in a bit later. He is the “doctor” after all and I wait for him, was he smoking outside, sipping coffee or seeing another patient, I do not know but either way he strolled in with his phone on his hip like a cowboy’s gun, the air of importance filling the room. “Let’s see the films,” he took out the films and held it to the window producing a “hmmm”. Indeed there were plaques but none were enhancing. During an MRI an injection of a chemical called Gadolinium is administered which binds with active plaques signifying disease activity or what is known as an “attack”. In either case, nothing was lighting up. Suddenly the change of flight, the panic stirred, all seemed misguided. “What was in the report,” I asked. He pulled it out of my chart and realized that nothing was said about active or enhancing so where was this man pulling those details from? He repeated the exam to make sure he had not lost his mind and the results were same but what of the IV? “You do not need to do it,” he said as we all walked back to the counter. He said something to the receptionist who waived us away “there will be no charge for today.”
This experience scared me the most. The situation was grim, this asshole painted a rosy picture for me, containing a normal life with daily injections of some sort of drug that did not help symptoms and MAYBE slowed down the disease. He called his old medical school to discuss my case since it was very aggressive for my age and disease duration. He, in a way, found himself overwhelmed by me but would never admit it of course. Truth is that his original plan was right. ACTH is a natural hormone that mimics the action of corticosteroids. At the time, either would help but he chickened out when no activity was present. In reality, a fact that many neurologists choose to hide is that steroids help symptoms of this particular type of MS regardless of activity. This is an inflammatory disease and anti-inflammatory solutions do help symptoms, which at the end is the cause of suffering.
A “doctor” who was recommended by many, including Dr. G , had treated my grandmother for Parkinson’s but we will get to this saga a little later. This man’s office was quite different. The examination room was small but had a little counter that was basically a two person bar that had only one bar stool, a symbol of power no doubt. In any case, I was told to lay down on the exam table and a series of neurological tests began. A different test was done to my hands, more for his own amusement as there is rarely a positive result in his patient pool, but my finger jerked sending this man into excitement at my misfortune, “You got Hoffman’s,” he announced as though I was the lucky winner of some sort of a jackpot. At that point the rest of the tests meant little as far as my diagnosis but he performed the rest before sitting on the bar stool facing a young, terrified and doomed patient. “Is this Multiple Sclerosis?” He had a way of speaking by posing questions and immediately answering them. He went over some of my CNS findings and said that it is “likely.”
Everything I had read started to pour out and while remarking about the supposed intellect that I exhibited by asking questions he quietly already saw a dead person in front of him. He told me about patients he has known that lost feeling of particular body parts and nothing else. I bargained with other possible diagnoses that he dismissed. Surely, there must be something. You cannot even test for MS, so what else could it be. “It may be stenosis of the spinal canal,” he said and we moved into the corridor where he had a light machine on the wall to view my scans. He said that he was looking for possible stenosis. The idea was right, the body part wrong… He would neither find it, nor really look for it, but pretended to establish the appearance of doing all he could was paramount.
He remarked about Tysabri as a wonderful drug, but it caused PML. I did not know much about this drug since at this point, it was taken off the market. I did not know what PML was and he did not bother enlightening me. He told me that I had to go on the injections immediately. Since I was on holiday from school, I had to go back. Upon hearing this, he said NO, you have to go on drugs, leave school and focus on this. “You will be paralyzed in a foreign country if you go back.” He gestured my mother to come into his sloppy office to receive the news that we already got several times. he told my mother that if it was one of his many children instead of me, he would medicate immediately. His office had boxes as though he had just moved in, other debris and of course all the props of pharmaceutical residue, COPAXONE, REBIF, AVONEX. Another one that is not pushed as much is Betaserone, which was the first one. Together they make CRAB, the typical MS cocktail. Whichever is more prominently pushed is a company that pays these people the most but at that time it was all inconsequential. I filled out the order for one of them but then decided to wait and thus I left.
My grandmother who was treated for Parkinson’s by this same man was not recognized by him nor his staff. She had been medicated for 3 years, experiencing hallucinations and a variety of severe side-effects when he told her that the diagnosis was wrong. I learned this later. What can seriously be said about such a creature. Assumption that I was a dead person anyway certainly made him feel decreased inhibitions in forcing me to do something FOR HIM. The drugs in the end would not help me but he may reap benefits. It was not so much fear but disgust that washed over me after a few days. How dare he suggest that I would leave one of my greatest, nearly completed, achievement in life. NO. Fuck that. At the end I left with nothing and flew back to Amsterdam.
6 months later..
I scared this neurologist displaying the fact that he, like many neurologists, did not deal with chronically ill patients like me. In fact, as he reviewed my case he remarked while looking down and away that “it is the most common in young people,” referring of course to Multiple Sclerosis. He did not offer any drugs as he was just eager for me to evacuate his field of vision. It may seem odd but this has happened a few times since. It is a strange feeling to scare professionals who are supposed to help. Steroids help and anyone can prescribe it but again, I did not know this yet. I left with nothing.
A friend of a friend, this doctor asked me to undress and put on a paper robe. I don’t know why, but I did. Her exam was same with same results although she acted neither scared of me nor treated me as damned. She noted her findings, ruling the MRI scans as not the most significant. Yet… “We need to wait for another attack to make a conclusive diagnosis,” she said as she pondered my state. Many aspects of CNS exam pointed the same way and out of respect she could not just throw such a diagnosis around, especially on a friend of a friend. I still left with nothing but a nerve conduction study that I asked for. She called a few days later to announce that I had Peroneal Neurepathy in my left leg, which was much worse at the time. I had researched this condition on my own and the symptoms fit. It made sense to me. I diagnosed myself first only requiring proof and consensus with a professional and I had it now. Of course this did not explain the Central Nervous System signs but…
I learned later that this doctor had a neurological disaster in her family which most certainly made her act softer and more careful, not to mention the fact of personal friendship connection and not a walk-in of the street. The neuropathy eased my mind somewhat as now there was a problem fixable by a surgeon. Surgeons fix things after all.
I found this surgeon as one of few people who performed the surgery to free the Peroneal nerve and I was soon accepted for a consult. Excited I waited at home for few months, then the waiting room, then in the exam room. Of course before being honored by the good doctor, variety of staff came in and out to do all sorts of tests. The final staff member came in smiling, her job was to do the neurological exam and here we went again. CNS problem ended the possibility of such procedure right there and although I saw the doctor after, he seemed to feel sorry for me and told me that he cannot help and to him it seemed more like MS .
This was a difficult blow although not necessarily unexpected. My disdain for ignorance had indeed raised my own questions. I had studied a significant portion of literature and knew what every test neurologists performed meant. But I had a nerve conduction test, which was enough to accept me into a long line of people waiting. Did that mean anything? He hit my knees, asked me to walk around on my toes, on my heels, I wobbled with my eyes closed. I failed all his tests. A hand off was prepared and an appointment was made with head of neurology and I felt dead again.
By strange happenings I ended up sitting on the table of a spinal surgeon, just looking for answers Neurologists failed to provide. Earlier visit to an orthopedic surgeon proved useless as all my bones and joints appeared ok. He did find it strange that my symptoms were so severe and suggested stretching. This surgeon ran into the room and swung his arm and hit me with the blade of his hand directly in the spot under the knee used to test reflexes. I had removed the films which had lesions before I gave them the envelope. I did not want to give ideas and ensure that this surgeon would look honestly at the pathology. By the time he came in, he had looked at my MRI scans outside and came with a diagnosis in mind. “You got Chiari, thats why your balance is off.” “What, whats that?” “The tonsils of your brain are descended, pushing on the spinal canal. You can see it here.” He showed the scan and pointed out what he saw. “It is fixable.” The words penetrated hard and deep, the ability to fix this. He had called and referred me to a neurosurgeon who was one of a handful of surgeons who did this surgery. If this surgeon did this himself, he had enough. This surgeon who saved the lives of others has given a gift of unmeasurable proportions, and so I waited.
Naturally I researched and researched and indeed all CNS signs could be caused by this. Having my brain pushed up seemed drastic but I would do it. It made sense, but it was rare. I still thought MS was rare at this point so why not something else. It is a birth defect and not the immune system turning on the body for “some” reason.`
I never met this man but spoke by email with his nurse. He ordered more scans and seemed to be on track for me to get on the table and have my brain repositioned. Until the meeting in which the doctor, his nurses and radiology staff met to discuss my case. “You have demyelination,” she said to me. “You need to get in touch with the MS people at the university.” “But Dr. C Surgeon diagnosed it as Chiari,” I pleaded. “Your tonsils are descendant but they are not pushing on the canal. We think its different pathology.” That was the end of this doctor. Somehow surgeons seemed closer to my heart, maybe because they actually fix people. This was the end of my surgical search but I would see them again…
It all sounded too good to be true. As much as I had grown to hate neurologists, surely they would see this too. But then again, it cannot be treated with medicines so maybe they looked at the scans from a myopic point of view. Regardless, the university assessment was geared towards surgery and there was less chance that the particular finding they were looking for would be overlooked. Demyelination is the process by which myelin is destroyed, creating the lesions on the brain and spine. Myelin is the protein surrounding nerve cells that is responsible for fast communication. Damaged myelin slows down the signal, exhibited by symptoms. It was very sad to realize this and once again I felt dead. The nurse’s tone changed from friendly to you are damned attitude. There is nothing we can do. Of course they now wanted to hand me off to the MS team, but I already had an appointment with head of Neurology. Maybe he would have an idea of why my diagnosis was so shaky yet my symptoms so severe.
The head of Neurology took several months to get to see. Leaving neurologists’ offices empty handed seemed odd and pathetic but this Indian was no different. Spending hours together, he delivered his sad story of how he had a heart attack at the age of 40 and almost died but was saved by a surgeon who was now dying of cancer. Everyone’ sad story is the saddest for them but telling that to a patient with little to no chance of improvement was ridiculous. I talked to him about India, as the idea of traveling was still very fresh in my mind, I wanted to see it at some point. He said that my neuropathy study was not done right and I had MS. Now the choice of the CRABS or other goodies the MS Specialists had up their sleeve. And so I left this man with nothing but a referral to the next quack.
It took months to see this man and for no reason. He sadly told me how he couldn’t walk to the end of the room but now he could. I was 24 years old and I could maybe walk that far, maybe not. Why do I care about his sad story? He was lucky to be struck by a disease that medicine knew something about. They knew NOTHING of MS. Nothing. Young people were destroyed, some quicker than others and medicine just looked the other way, throwing their hands up. You are just damned. One useful piece of info that came out of this ‘doctor’ who prided himself on making more money seeing patients than his job as a professor was his friend, a neurologist close to my house with whom I would meet some time later.
MSS stands for Multiple Sclerosis Specialist
The waiting room was very large, full of neurologically damned people. People in wheelchairs, with walkers, canes. Nothing had really changed in 100 years, yet they said that it did. If anything, many of these people were worse off. Now with additional symptoms, courtesy of the drugs that they took out of trust in their ‘doctors’. Nothing was predictable because nothing was really known. How can a patient who has attacks every 10 years feel any benefit out of the drugs? Remissions unpredictable, attacks unpredictable. It was more of an international agreement to feed patients such and such just to pretend that something is being done. Realistically, these doctors were not sick. How could they know what it is like? This woman was younger than the rest but perhaps even colder. She came out in high heels holding a piece of paper and called my name. I already had a very hard time walking with my left ankle not bending regularly at all and I used all my power not to trip on my self. She led the way to her office which was not really an office like the others. This was a professor’s office, with books, desk and student papers. She wore a lab coat, but that was purely customary, pageantry. There was an examination table but even that was different. It was higher than the others, as though a stage to display the damned. This was the setting not to help but to observe. A live human cadaver. She hit my knees with her hammer, dragged the end against my soles, and the rest of the standard CNS function tests. She had no desire to help me, I was dead.
She looked through my scans and even commented that my spinal scans were not really consistent with MS diagnosis. The chief radiologist had commented the same way, that based on the scans of brain it did appear to be MS but spine pointed to something else. She was not sure what to diagnose me with by looking at the exam but my rapidly progressing condition forced her to order more tests and throw a diagnosis at me of Progressive MS. Why not, when in doubt… Anyway, all sorts of rare disorder tests were ordered. Ok, but “what about steroids?” The response to this was coming from a ‘scientist’ not a ‘doctor’ and it was simply stated, “steroids help everything, why would we give you that…” Hmm, so I am suffering and steroids help but I cannot have it because I need to be diagnosed and put on drugs which are shown to help only 30% of those on it and even that is questionable given the remissions that happens anyway so how to really know efficacy. But wait, no drugs help progressive MS so why is this even an option? “Well, even though you seem to have progressive MS, we will treat it as though it is Relapse Remitting,” she answered and I was silent. How can someone who knows nothing of the cause of this dispense drugs like candy. It may not work but you will get worse anyway so why not try, right? Actually people in multiple year studies have demonstrated no real results and moreover, felt worse on the drugs. Of course there are those who will thank their doctors and treat these drugs as religious artifacts, but isn’t it always the case that some will be found who are like that? Months of waiting has resulted in not only being denied actual help but an insult to go along. We are all dumb, damned patients that are now only good for the extraction of money and used to experiment and observe. I left, holding on to walls and unable to bend my foot with no help, nothing.
Soon after this disastrous appointment HBO began showing Lorenzo’s Oil movie. This true story movie chronicles the severe decline of a child, struck by Adrenoleukodystrophy or ALD. A neurological disorder shutting down EVERY system of the body, affecting children most often. Crying while watching, I could only be thankful that I had the power of suicide. My research changed to methods of suicide that were least painful and most effective. I wanted to just go to sleep. Medicine had failed me and my only definite prognosis is worsening. There was no way I would submit myself to these animals to feed off me, I rather die on my own terms.
Chemotherapy was loosely suggested as well, which just infuriated me. I once though that specialists in Multiple Sclerosis were people who were personally affected by it but what I learned is that that is not the case. Vast majority just found a mystery disease more interesting and the power to try all sorts of toxins to see what would happen was, exciting. I remembered a story of AZT, a drug developed for Cancer that was deemed too toxic for human consumption but when AIDS came this same drug suddenly became OK to give to damned patients. Many died from the drug before AIDS killed them but a mystery diagnosis opens the doors to use whatever means are available. MS was and still is at the time I am writing a damned, mystery disease, hence Chemotherapy, Tysabri and other toxic chemicals are given to diagnosed people under the guise of ‘treatment.’
She sent me for a lumbar puncture. A process that I have since learned was much less of a big deal than that first experience but regardless. It was inconclusive and left me with no Dx and no help.
This neurologist was the one connected to Dr. A as a past student, learning nerve conduction techniques in Electrical diagnosis of variety of peripheral nervous system problems. Another Indian man, whose office was in a building adjacent to one of the major hospitals. I will never forget the face of a wheelchair bound boy sitting in a waiting room with his mother, who was whipping the drool of this child’s chin. What could this doctor do for this child? For me? He came out and called my name. I sat close to the locked door so I would not need to walk far and I had a wall to lean on. I struggled up and followed him in. My ankle was not really bending, so I dragged it while holding on to walls. He watched he struggle and scribbled in my chart. We walked into his office which had magazines laying on the side of the desk where two seats for patients were, a computer and some papers decorated his side. I handed the CDs of my MRIs to him and he put it in his computer. “You are not from here,” he said looking at my name. Yes, I am from Europe, I was in school there when this started happening. “Oh, we love to travel. I love Europe,” he commented. That’s great but I cannot even walk, why tell me this. He began to look through my scans. “You got a lesion in the brain-stem, whats that called, hmm.” I turned and looked at my mother. “I don’t know,” I responded back. “Well,” he said, “there are two options we can make. One is going on one of the CRABS or we can try high dose steroids. I am not sure if it will help, nothing helps progressive and that seems what you have but I am willing to try.” He wrote out a script for outpatient infusion of 1g a day of SOLU-MEDROL for 4 hours a day for 5 days.
We proceeded to his exam room where the same series of tests were performed and he looked at my blood work results. “You Vitamin B12 is very low,” he remarked. Indeed, my level was quite below normal but the other ‘specialists’ did not even pay attention. “You know, B12 deficiency may be causing all your symptoms,” he commented while still reading. But what about brain lesions. “It can cause that too, I had a patient that did much better after increasing B12 level.” He pulled out his rx pad and wrote out a prescription for B12 and syringes. “You have to inject it, levels this low probably means you are not absorbing it.”
I walked out of the hospital on the fourth day of treatment without holding on to anything. The joy was difficult to believe. I could not walk far or fast but I was better. After the 5th day I went back to see this man. He was happy that I got better as it meant that it was not progressive. He prescribed steroid pills that I would need to take as a taper down measure. He warned that I should watch salt and that I would most likely gain weight. That was fine with me.
My return again was in a few months during which I continued to improve. I was almost OK. He was surprised, ordering liver function test and more MRIs while continuing steroid pills. I continued the pills for months, getting the liver function tests often. Liability management indeed but he was helping me so why not help him. The MRIs curiously manifested themselves in a strange pattern. My spine cleared up entirely, becoming what is known, in radiologist jargon, as “unremarkable.” The brain however did not appear to change BUT the enhancing lesions seen at the time Dr. M looked at it were now not lighting up. Incidentally, progressive MS hardly has any brain lesions, realistically it is a completely different monster. This was known at the time hence the confusion of how to label me. Dr. A laughed when I said that this was mentioned to me as I was quite young for such diagnosis and would be an anomaly although it does happen rarely.
My last visit to this doctor came almost a year later. I ,of course, wanted more steroids, they were doing wonders for me. Yes, I gained weight but it was not too much and I had a life. I got a job, I was going out with friends. I could not run but I could walk, quite far. I was able to hide my condition once again. Nobody knew. I asked for more steroids but something had changed with him. Eight months of steroids and now 90% improvements scared this man. He suddenly told me that I must go on one of the CRABS. But why? “You are not enhancing anymore, you do not need more steroids.” I want all symptoms gone. He smiled, “I did not think we would get this far. Now you have to choose one of these, I don’t care which one.” “Well, I should read more then.” “I won’t see you for a year,” he said and laughed. He would not see me ever again.
The first doctor in a long series of quacks that gave something to try. I did 5 days of IV steroid which made me feel better but still nowhere near where I needed to be and then, the magic drug which cost next to nothing pulled me out of a deep hole. Sadly, it was not a complete recovery and much of what I lost remained lost but to have most of it… So, the disease with no real treatment had a hidden approach. But this was not hidden, everyone knew. Why they did not want to help I do not know and perhaps it is unfair to make my own conclusions but when a ‘doctor’ tells someone they are essentially fucked, give them what will help and what they are asking for. It does not ‘treat’ MS but it does subvert the immune system from destroying the nervous system and most importantly, it helps symptoms. Yet, these so called ‘doctors’ held this information to themselves and I did not know. Steroids have been accepted for treatment of attacks but even then it is much less than the dosage I had, why? In a situation such as mine, the judgement of the ‘doctor’ plays a significant role. I am already here, I am already screwed, help me. Help me anyway you can.
Sadism is perhaps the best word to describe it. Patients are stupid, helpless, hopeless. They will take anything. Which is even more reason to give them whatever is known to help instead of what was decided to kind of slow down the disease, which in itself is VERY questionable.
Almost 2 years later
Upon renewed worsening I saw another neurologist who was so scared of me that she gave me what I wanted but only partially. She hit my knees with her hammer and watched me walk. Her face changed from smiling and welcoming to what kind of casket do you want. I kept asking for pills but according to protocol I had to get an IV first and so I went to the hospital . It was for 3 days instead of 5 but it was 4 hours each day Of course much more money was made from the hospital visits and so I had to capitulate to the machine of finance. Upon seeing her again, she admitted that my case was beyond her and I should see a ‘specialist’ that was close. OK. Pleading for something I knew helped did not move this woman. I was an ignorant, damned patient anyway and as sad as it was for a physician, she wanted me out of her sight. It is standard practice to prescribe a small dose taper after an IV treatment but I needed and wanted a high dose combination of pills which was outside of protocol because God forbid the patient actually gets better. And so…
The waiting room at this ‘doctor’ was large and revealed itself immediately upon the opening of the elevator doors. The room was nothing like the previous ‘specialists’ and in all honesty it felt somewhat better. There was nobody in the waiting room except a woman in a wheelchair with her husband who were called in shortly after. What could she possibly leave with I wondered as I filled out the packet identifying my symptoms and defects. I was called in soon after I turned in my confession and took my seat on the paper covered exam table in a room containing a computer table with a computer, an office chair and two seats for guests. A white man walked in and greeted us as he began to sift through my paperwork. He read and then turned towards me, “you need to be on DMDs.” Dmd stands for, Disease Modifying Drugs, a euphemism as these drugs are only immune-suppressants but come at a huge cost and many many side-effects. Their efficacy is questionable since the disease process is not understood. If the pathology is not clearly understood, how can it be ‘modified’? As I am sitting there looking at the posters in this room, this man wheels himself to me in his roller stool and begins his neuro exam. Constructing the perception of a more detailed exam, he threw in a few more tests that I had not encountered before; he felt my cold feet and notated it, having already known of the discovery that I did not yet. One would think that that would be something to mention to a patient with no hope but that did not stop him. “Do you have trouble controlling your bowels?” He asked, as though it was my cue to say YES. “No,” I answered, “that is not why I am here.” “Well, you know what this disease can do,” he stated as he scribbled something in my chart and proceeded to draw on the paper I was sitting on. “This is the MS building,” he said as he drew a box with 3 sections. “We got DMDs on first floor, Tysabri on second and trials on third. You need to enter the building.” He had mentioned Tysabri as being a great drug to stabilize MS. Really? What about PML? “Studies have shown that if it is taken for a year or less, the risk drops significantly.” By this point Tysabri was brought back to market due to patients’ demands for the “only” drug that had benefits. but it had to be done once a month at a infusion center, which this doctor actually had on site, and it had a risk of severe brain infection. But again, this doctor was no sick, how could he be expected to care if the established protocol dictated the following treatment.
I asked about blood flow, since my own research was starting to point that way and he responded instantly that blood flow had NO ROLE. He inquired if I was a member of MS Society to which I said “no,” and was quickly handed a flyer. A binder explaining his proffered DMD was given to me as well. Colorful binder with pictures and drawings explained the idiotic understanding of the disease and even less coherent explanation how the drug works. An absurd illustration of medical community’s ignorance wrapped in a shiny wrapper to support the use of a drug.
I told him that I just returned from Germany where I received an autologous stem cell transplant where they took bone marrow from my pelvic bone, processed it and re-implanted into my spine, to which he said that it was a waste of money because the immune system needs to be destroyed first. The attitude against the immune system baffled me but that is the way they thought/think.
I told him that I was now, on my own self-treatment schedule and was taking steroids, as a taper, that I got through different channels. He grunted, “ I don’t know what kind of taper that is, I give much less and for a shorter time.” Why wasn’t I surprised. God forbid something actually helps. He did do a good job of inducing fear and I guess that was his goal. So I agreed to the medications and filled out the forms but the feeling of it being misguided bothered me. I could not go on trials if I did Tysabri but that has been shown to help, I could go on regular injections but that probably does less than nothing. So I left, leaving the forms in my chart, a handshake and no help.