Dr. Edward Harper

Prelander | MS | 7 Reasons (Stable)

F*ck it. I’ll probably get reported for this. I don’t care. Your scan is not telling you the truth. I started my 1,412th patient on infusion therapy on February 6th. Eleven days later, at 6:40 PM on February 17th, I was in the chair receiving my own first one. I was 54 years old. I am a board certified neurologist. Nineteen years of practice. Fellowship trained in multiple sclerosis. The order was written by a colleague I had trained four years earlier. I have had MS for thirteen years and I refused to escalate for eleven of them. Because every scan I have ever had came back the same. No new lesions. No enhancement. Stable. Nine days before I sat in that chair, my right leg stopped working in the corridor outside my own clinic and I could not get up off the floor. First came the rollator. Then the quote for a stairlift. Then the infusion, every few months, for the rest of my life. They let me keep practising. My privileges are intact. But I will never write the word stable on another MS report without remembering that mine said stable every year for thirteen years while I lost the use of my right leg. I am writing this because I know exactly what my colleagues will say when they see it. I do not care. If you have multiple sclerosis, or someone you love does, please read the entire thing. I know it is long. I know you are scrolling. I know you have things to do. Eleven months ago I would have given anything for someone with my credentials to sit me down and tell me what I am about to tell you. Nobody did. I was diagnosed with relapsing remitting MS thirteen years ago at 41. It started with optic neuritis in my right eye on a Tuesday. I lost most of the vision in it for nine days. I diagnosed myself in my own office before I ever saw a colleague about it. My mother had MS. She was called stable for nine years. The spasticity took her walking at 61, then her standing, and she needed full time care for the last four years of her life. She passed in a nursing home at 67. The last MRI in her chart was read clean. No new lesions. I had watched the pattern in my own family, and I had built my entire practice on treating people who looked like my mother. I did what any MS specialist would prescribe. I started on Copaxone at diagnosis. I moved to Tecfidera four years later after two new lesions. I have not had a relapse since, and that is exactly why I would not escalate. Every year my scan was clean and every year I told myself the drug was working. I did everything else too. I took vitamin D every single day for thirteen years and kept my levels exactly where they should be. I did physiotherapy twice a week for nine years. I swam. I bought the cooling vest. I read Terry Wahls and I ate that way for two years, no legumes, no grains, nine cups of vegetables a day. I lost a lot of weight and kept it off. I checked every box on my own protocol. I checked boxes most of my patients cannot afford to check. And every year, my MRI came back the same. No new lesions. No enhancement. Stable. Stable. That word again. Last September I did something I had never done in thirteen years of having this disease. I ordered tests on myself that measure what an MRI does not. The first was an OCT. Optical coherence tomography. It measures the thickness of the nerve fibre layer at the back of your eye, in microns, and that layer is central nervous system tissue. It is the one place you can see the structural health of your nerves, and it can show damage even when your MRI is stable. Mine had been 94 microns five years ago. It came back at 71. For context, I have called patients with smaller drops than that and used the sentence, we need to talk today, not tomorrow. My MRI over those same five years had not changed at all. The second was a timed 25 foot walk. It is the crudest test in MS and it is the one that predicts what your life will look like in ten years. Five years ago I walked it in 4.6 seconds. That afternoon in my own hallway, with a stopwatch and nobody watching, I walked it in 9.1. I had not had a relapse in nine years. There was no lesion anywhere on my scan to explain either number. I booked a neuro ophthalmology consult for myself. And then I did not go. I want to tell you why. Because sitting in my office at 7 PM staring at my own retinal thinning on my own screen, I recognised something. I was doing exactly what my mother had done. She had been called stable for nine years before the decline that put her in a chair. She had been on an interferon and a muscle relaxant. Her scans had read clean. Her lesions had been controlled. And she had died at 67 in a nursing home ninety minutes from the hospital where I trained. I did not go to my own consult because I already knew what it would show. I did not want it in writing. I told myself I had time. Five months later I went down in the corridor outside exam room four. My right leg gave out at 3:20 in the afternoon. I remember the time because I had just finished a new patient consult and I looked at the clock to see how far behind I was running. I thought I had caught my heel on the door frame. I had not. It was the weakness I had described to four hundred patients in follow up appointments. Right hip flexor first. Then the foot. Eleven steps down the hall and the leg would not hold my weight, and I went down against the wall and sat on the floor of my own clinic with my badge on. A junior doctor I had trained through her MS rotation came around the corner. She is not an MS specialist yet but she has heard me describe this exact presentation in that clinic for four years. She saw me on the floor and her face did the thing. She got me up off the floor, into a wheelchair, and down to imaging herself. They put me in the same machine I have sent four hundred patients into. I closed my eyes because I already knew what the report was going to say. Forty minutes. The same knocking I have described to four hundred people as nothing to be frightened of. They were looking for the relapse that would explain the leg. There wasn’t one. The report came back the way my reports have always come back. Stable. No new lesions. No enhancement. I went home that night with my wife, a rollator, a leg that would not hold my weight, and a scan that said there was nothing wrong with me. After the fall, my colleagues wanted me to have a full workup. Every system, not just the leg. I did not want one. I ordered every one of those tests on myself anyway. Because I knew that if I did not, in three years I would be reading somebody else’s chart and seeing my mother’s numbers in it, and then my own. The neuro ophthalmologist repeated the OCT on both eyes. Both nerve fibre layers had thinned. Nobody had flagged it in thirteen years because OCT is not part of standard MS follow up in most practices, including the one I built. The bladder study found I was not emptying properly. Neurogenic bladder. I had been getting up twice a night for two years. I had blamed coffee. The neuropsychologist put my processing speed at the 14th percentile. I had been taking charts home for eight months. I had blamed my clinic volume. The peg test showed my right hand was four seconds slower than my left. I had stopped doing my own lumbar punctures the previous spring. I had told my partner the junior doctors needed the practice. Every one of these was getting worse while my MRI was stable. Not one of them was a relapse. I sat in my office on March 2nd with all four reports in front of me and I understood something I had never let myself understand in thirteen years of treating this disease. Every drug I had ever been on was working on the immune attack. Copaxone was working on the immune attack. Tecfidera was working on the immune attack. The infusion was working on the immune attack. All three did it well. Nine years without a relapse is those drugs doing exactly what they were built to do. Not one of them was built to look after the nerves I still had. I am an MS specialist. I am supposed to be the person who knows how to stop this. I had put hundreds of patients on the exact protocol I was on. Every one of those prescriptions was correct. Every one followed the guidelines. Every one was the standard of care, and I would defend every one of them in front of any medical board. And it had not been enough for me at 54. I sat at my desk that night at 11 PM after my wife had gone to bed and I did something I had not done since medical school. I opened the research and I searched for the actual mechanism. Not the drug trials. Not the management guidelines. The mechanism. I read for five hours. I found what my training had covered lightly and never in the depth it deserved. PIRA. Progression independent of relapse activity. It is the explanation for why my scans never showed anything new, why I had not relapsed in nine years, and why my walking and my hands and my thinking got worse every year anyway. Every nerve in your body is wrapped in a fatty coating called myelin. The nerve needs it to carry a signal. MS strips it off, and what is left is a frayed nerve, working far harder than it should to do its job. Looking after that nerve takes material and energy, every single day. That is what PIRA is. It is not new damage. It is old damage the MS already did, and a nerve left to cope with it on its own. And this is why your MRI can come back stable while your body keeps telling you a different story. None of this was hidden. It sat in journals I have had access to for nineteen years. The Lancet Neurology. JAMA Neurology. Multiple Sclerosis Journal. The New England Journal of Medicine. I had read those journals every month. I had read them for the drug trials. I had never read them for the mechanism papers. I closed my laptop at 4 AM and I sat at my kitchen table and I could not sleep. I understood at that moment that I had told hundreds of people they were doing well while this was happening inside them. I had said the words your scan looks great to people whose nerves were struggling while I said it. Two weeks later I saw a patient in follow up who should not have been doing as well as she was. Her name was Emi. Diagnosed fourteen years. She had transferred to me four years earlier after a bad relapse. Her fatigue score was one of the worst I had on file. I pulled her chart before she came in, expecting to talk about a wheelchair assessment. She walked into my office without her stick. I looked at her across the exam room and asked her what she was doing. She was quiet for a moment. Then she said, Doctor, my grandmother Michiko has been telling all of us for years. I did not bring it up because I did not think you would take it seriously. I asked her what her grandmother had told her. She wrote a name and a town on the back of my prescription pad. The name was Michiko Tanaka. The town was a small one I had never heard of. I drove there the following Saturday. I did not tell my wife where I was going. I did not tell my colleagues. I did not tell anyone in my department that a board certified MS neurologist was driving two and a half hours to meet a 76 year old Japanese grandmother because everything I had been taught in nineteen years of practice had not saved me. I pulled into the driveway of a small house at 11:20 AM. She was in the garden along the front path. Shiso. Ginger. Perilla. A persimmon tree by the door. She was 76. Small woman. Thin. Grey hair pinned back. She stood up out of that garden without putting a hand down to push herself up. I introduced myself. Not as a neurologist. As Michael. She looked at me with sharp clear eyes and asked me why I had come. I told her. I told her I was an MS specialist. Nineteen years in practice. That I had gone down in my own clinic six weeks earlier. That my scans had been clean for thirteen years. That four separate tests in my own body were showing the pattern I had watched in hundreds of my own patients. That one of my patients had told me about her. She listened. She did not interrupt. When I finished she said, Come inside, doctor. Her kitchen smelled like ginger. She poured me tea without asking. She had been a hospital pharmacist in Osaka for twenty eight years before she moved here. Her sister in Japan was diagnosed with MS thirty one years ago. Her sister is 72 now and still walks every single day. She sat across from me and said, You are here because your scans are clean and you are getting worse. I said yes. She said, Then you already know your medicine is only fighting half the battle. I did know it. She said, In Japan we look after the nerve. Here they treat the immune system and they wait. Both are necessary. Your doctors gave you one. She got up and set three small bottles on the table in front of me, side by side. She tapped the first one. B12. The building material your nerves rely on. She tapped the second. B1. Your nerves need an enormous amount of energy, and this is what helps them make it. She tapped the third. B6. What your nerves need to send clean signals through your body. She pushed the three of them together until they were touching. Together they are called the neurotropic vitamins. Not general health vitamins. Neurotropic means they act on nerve tissue. In Japan they have been used together for nerve health for decades. Your doctors gave you none of them. I told her I understood the biochemistry. I told her I had read the papers. She said, Then you understand it on paper. You do not yet understand it in your own body. Now here is what nobody taught you in medical school, she said. For as long as anyone in my family can remember, this is what we have used for nerves. My mother. Her mother before her. I am seventy six and I have never had a nerve problem in my life. My sister has taken these every day since the month she was diagnosed. She said, There is a cheap version of each of these and a better one. The cheap ones are synthetic. Cyanocobalamin instead of methylcobalamin. Pyridoxine hydrochloride instead of P5P. Your body has to convert them first, and not everyone does that well. Almost everything on a pharmacy shelf is the cheap one. And the cheap B6 is not only weaker. Too much of it over a long time can cause nerve problems of its own. There are nerve formulas on pharmacy shelves at 100 milligrams. The requirement is one to three. She is right. It is well documented. I have seen it twice in my own clinic, and both times the patient had bought the product to help their nerves. I asked her if the way you take it mattered. She nodded. Your blood test for B12 is a useful number, she said. But it only shows what is in your blood. Swallowed tablets have to get through the stomach, and the gut does not always absorb B12 well. Especially as we get older, or take certain medications. In Japan the doctors often give these by injection. You can take them as drops under the tongue instead. No needle. No pills. She paused. There is a company my niece told me about. All three neurotropic vitamins in one formula. The active forms, not the synthetic ones. B6 held where it is safe. Drops you hold under the tongue. She wrote a name on the back of an envelope and slid it across the table. Stedman. 5 in 1 Nerve Protection Complex. I read it in her driveway before I started the car. Active B12 as methylcobalamin. B1. B6 as P5P, held where it is safe. Plus niacin and folate. All three neurotropic vitamins in one formula. Drops under the tongue. I ordered three bottles from her kitchen table before I left. I drove two and a half hours home. I did not tell my wife where I had been. They arrived that Wednesday. I took the first dose the next morning. Week one. Since the fall I had been shutting my office door between 3 and 4 every day so I could lie down. On day six I worked straight through to six. Week two. I had been sleeping with my feet outside the covers since the summer because of the burning. That week I pulled the covers up. Week four. The afternoon crash I had built my whole day around was smaller. I noticed it because I forgot to shut my door. Week six. I slept through the night without getting up. Twice that week, four times the next. Week twelve. I stood in my own hallway with the stopwatch again. I did not look at the number for a long time. I just noticed that my leg felt like mine. And my MRI said exactly what it has always said. No new lesions. Stable. Same two words. A very different afternoon. I brought it all to my practice partner. Another MS neurologist. Twelve years in practice. I told her everything. The pharmacist. The kitchen table. The three bottles pushed together. She listened for an hour without interrupting. Then she asked the only question that mattered. Whether it was safe next to the infusion. B vitamins are generally taken alongside MS treatment. I am still on Ocrevus. That is not what this is. This is the other half. The half nobody gave either of us. In June I stood through my daughter’s entire graduation. Ninety minutes, outside, in the heat. I have not been able to bear the heat in years. I went down in the hallway of my own clinic at 54 with a scan that said stable. I am writing this because I know what my profession is doing, and I am the profession. I have read 9,187 MRIs. Every single time I wrote stable, no new lesions, I believed I was delivering good news. I watched the relief on people’s faces. I said the words your scan looks great to a woman who told me in the same visit that she had stopped playing piano, and I did not connect the two. I do not know how many of those people are in a chair now. I do not know how many of them are gone. I know that the standard of care I was trained in, and that I taught to junior doctors, is built on the assumption that stopping new lesions is all you need to do. My mother’s chart proves it was not enough for her. Nine years of clean scans, and she stopped walking at 61. I went down in that hallway at 54. Seven years ahead of her. The difference is that somebody’s grandmother told me what my medical school did not. If you have MS, or your wife, your husband, your mother, or your daughter does, and you have been told your scan is stable while your body keeps getting worse, please listen to what I am telling you. The scan counts lesions. It cannot show you how your nerves are coping. Stable means no new lesions. It does not mean your nerves are being looked after. Your DMT works on the immune attack. It was never designed to feed the nerve. Steroids end a flare faster. They do nothing for the nerve once the flare is over. Physiotherapy teaches you to work around what you already have, and you should still do it. Vitamin D is worth keeping at a healthy level. I did, for thirteen years, and I went down in that hallway anyway. A clean diet helps your whole body. I did two years of Wahls and my nerve fibre layer thinned the entire time. What your nerves rely on every single day are three specific vitamins. B12 for the material. B1 for the energy. B6 for the signal. All three, in their active forms, in one formula. Stedman 5 in 1 Nerve Protection Complex All three neurotropic vitamins in one formula, plus niacin and folate. Active B12 as methylcobalamin. B6 as P5P, kept at a level where it is safe. B12, B6 and B1 contribute to the normal function of the nervous system. Drops you hold under the tongue for a moment, every morning. That is the whole routine. 90 day money back guarantee. If you are not happy within three months, you get your money back. The system that trained me did not give this to me when I needed it. It is reaching you now. P.S. My mother was called stable for nine years. She stopped walking at 61 and she passed in a nursing home at 67, and her final MRI report says no new lesions, and I have a copy of it in my desk. I built my entire practice on the belief that I would prevent for my patients what nobody prevented for her. Instead I walked the same road in my own body, under the same word, and I got there seven years earlier than she did. The difference is that I got up off that hallway floor and she did not get a second chance to. Please do not wait for a scan to give you permission to take this seriously. It will not. P.P.S. I am writing this at 11:40 PM on a Sunday, alone in my office, because a patient came in on Friday whose walk had slowed again in seven weeks and I recognised my own story in her chart. Please send this to anyone you love who has MS. Even if they are doing well. Especially if they have just been told they are stable. ~ Michael, 55