Читать книгу: «Multiple Sclerosis. Everything you need to know»

Preface

Why Is This Book Free?

Because I want this book to reach as many patients as possible. Open statement: this work belongs to the public, and I am not protecting its copyright. As the author, my rights are inherent, and I am explicitly giving you full permission to download, upload, share, forward, or even sell it. Do whatever you want. Sharing this with a fellow MS patient is a good deed. Printing it, translating it, or publishing it is a massive good deed. The only thing I ask is that you keep my name on the cover.

Originally, the book was supposed to be published by Alpina-PRO publishing house. I had negotiated with the editor-in-chief, signed a licensing agreement, and was even assigned a managing editor who had a medical background. I even had a co-author—a neurologist well-known in the Russian MS community. It started out simple: I wanted to compile basic information about multiple sclerosis—explaining its courses, remissions, relapses, DMTs, lesions, disability scales, HSCT, mesenchymal cells, and so on. Essentially, a beginner’s handbook.

I buried myself in research, eating and breathing multiple sclerosis all day long. At some point, I realized I had misread a great deal of it. A little later, I realized I had misunderstood almost everything. Shortly after that, I noticed that other patients were getting it wrong too. Then came the realization that my co-author didn't understand it either. Ultimately, I saw that everyone in the field was completely turned around.

Naturally, I assumed I was the problem. Lost in my own confusion, I emailed a professor of hematology who specializes in MS and asked him to proofread a few chapters. To my surprise, he wrote back telling me I was completely right, praised my work, and offered his full support. He even volunteered to write a review.

The sensation was bizarre—it felt as though everyone around me was insisting the Earth was flat. I was shouting that it was round, backing it up with logic and evidence, yet everyone smiled and assured me it was flat. I called a dozen specialized MS clinics, and they all confirmed the flat-Earth theory. To make matters worse, I was heavily abusing substances at the time—I won't list them, as the Russian law forbids it. In short, I had a full-blown psychotic break. I became deeply paranoid, genuinely believing people were out to kill me, just like in a movie. I spent four months in a rehab facility, got clean, and cleared my head.

Once out, I finished the book—but the deadlines in the publishing contract had long expired. The editor-in-chief informed me that the house was facing hard times, and funds for "non-target projects" were frozen, pushing everything to the next year. Honestly, it was a blessing in disguise. The original draft was raw—not bad, but incomplete.

Later on, I decided to polish the text and publish it entirely for free. Here is my request to you: if you find this book valuable, please forward the file or the link to other MS patients and ask them to pass it on. After my first book, many readers tracked me down on social media. To keep things simple, you can reach me directly at puzanovsi@gmail.com. I’d be happy to hear from you and answer any questions.

Disclaimer

Once the manuscript was ready, I fed it into Google AI to check for factual errors, verified numbers, and logical consistency. I must admit, it's an incredible timesaver. The AI gave it a thumbs-up, rating its scientific accuracy at 90–95 points. However, it also insisted that I include a formal medical disclaimer.

First and foremost: I am not a doctor. Frankly, I don't know if that's a blessing or a curse—had I gone to medical school to become a neurologist, I would probably be just as misinformed as the rest. I would have studied the same flawed textbooks and repeated the same dogmas as my colleagues. I would have run with the herd and called it "truth" simply because everyone around me agreed. Still, legal obligations dictate that I warn you: I am a patient, not a physician.

Secondly: I strongly encourage you to cross-check everything written here. In fact, if you spot an error, please reach out and let me know. Despite exhaustive fact-checking, mistakes are inevitable, and I may have misread or overlooked certain nuances. If you decide to verify this information with a professional, I highly recommend consulting an immunologist or a hematologist rather than a neurologist. You will likely be stunned by how radically hematologists and neurologists diverge on the actual nature of multiple sclerosis.

The rest is standard legal boilerplate. There are no direct medical prescriptions in this book, so it’s highly unlikely to cause any harm. All data regarding pharmaceutical companies, drug efficacy, and side effects is drawn directly from public, open-source records—there are no industry secrets hidden here. As you well know, MS is deeply unpredictable and varies from person to person, but I am legally required to remind you of that fact. Most importantly, please consider my conclusions as personal evaluative judgments; they are not intended to defame or damage the corporate reputation of any brand. I have no desire to offend anyone—I simply want patients to know the truth.

I would like to apologize for my English—please forgive me, as it is not my native language. If anyone feels like rewriting or smoothing this text out while reading, please don't hesitate to do so. You are more than welcome to republish the book and add your name to the cover. You can even print it—who knows, maybe you'll make millions or billions from it! My Russian is perfectly fine, honestly, but my English, unfortunately, is a bit rough around the edges.

The AI also mandated that I insert the following text verbatim: "This text reflects solely the personal opinion and evaluative judgment of the author, based on his individual experience as a patient. It does not constitute a medical guide, a scientific treatise, or a direct call to action. The author assumes no liability for any independent decisions made by readers, including the discontinuation or modification of prescribed therapies. Readers must consult a certified healthcare professional before making any medical decisions."

Introduction

«Half of what you’ll learn in medical school will be shown to be either dead wrong or out of date within five years of your graduation.

The trouble is that nobody can tell you which half».

David Sackett

A Little Bit About Me

How did we reach a point where both patients and doctors are completely blind to the reality of multiple sclerosis? Why does a disease that some hematologists learned to completely stop thirty years ago remain "incurable" in the minds of mainstream neurologists? Why does the flawed model of relapses and remissions refuse to die? Why is everyone ignoring the artificial spike in patient numbers, particularly in the United States? Why do people who have felt perfectly fine for years continue to inject toxic chemicals that make them actively miserable? And finally, why is a book meant to untangle this entire mess being written by a patient instead of a doctor?

Personally, I think it’s fate. Consider this: for six years, I rented an apartment belonging to another man named Sergey who also had multiple sclerosis. The odds of such a coincidence are one in several billion. His story ended tragically—he stopped recognizing his loved ones, was confined to a wheelchair, and laughed uncontrollably without stopping. My landlord, my namesake, and my brother-in-arms died while being spoon-fed. He choked on his food, suffocated, and passed away. Unfortunately, that is exactly what the terminal stage of multiple sclerosis progression looks like for some patients.

So, multiple sclerosis! The disease is choked by a staggering mountain of myths and misconceptions—it is hard to find another condition on Earth where reality has been so thoroughly distorted. Errors plague every single stage of the disease, from the initial diagnosis and the evaluation of drug trials to how society views patients. In Russia, for example, every other person thinks sclerosis is just a fancy word for being forgetful, simply because of a terrible translation of the medical term.

Worse still, a significant number of people diagnosed with "multiple sclerosis" don’t actually have it. The crisis is most acute in the United States, where the bulk of clinical trials for "disease-modifying" therapies are bankrolled. By 2025, estimates of the US patient population hit one million—making the disease magically several times more common there than anywhere else on earth. Can you imagine the chaotic distortion this overdiagnosis inflicts on drug efficacy data? If a massive chunk of a clinical trial consists of perfectly healthy people, you can "contain" the disease with absolutely anything—from burdock leaves to homeopathy. And that's not a joke; there are corners of the Russian internet where people passionately defend burdock roots as a legitimate cure for MS.

The most shocking part? Doctors are treating these healthy people in absolute sincerity. The mistake is sustained by the "non-linear" nature of the disease: several years usually pass between the underlying onset and the first physical symptoms, making it incredibly easy to mistake a natural absence of disease for a therapeutic remission. Doctors evaluate these drugs alongside regulators: if a drug holds the line in three out of five cases, the physician sees a reflection of the clinical trial data and asks no questions. When asked why a drug works for some but fails for others, the system retreats to its ultimate defense mechanism: "Sclerosis is a disease with a thousand faces; every patient's journey is unique." The dogma that "different drugs work for different patients" is the absolute baseline of modern MS care.

The patients' reaction is equally bewildering. Those whose disease naturally plateaus end up worshiping their neurologists and their prescribed regimens. Meanwhile, those who are steadily deteriorating accept the gradual loss of their limbs as an inevitable consequence of the diagnosis. After all, it's multiple sclerosis—it’s supposed to be terrifying! Any logical contradiction is immediately dismissed by the reminder that everyone's course is entirely unique.

I used to be just like them, slowly retreating and surrendering my body. After they put me on Ocrevus, I could only sit back, hope for the best, and watch my functions slip away. My doctors kept insisting that "the relapse will blow over soon, it can't last forever, just give it time." So I waited. For two agonizing years. Naturally, I regret that delay now, and I will probably regret it for the rest of my days. If I had shaken myself awake and dragged myself to the Pirogov Hospital sooner, I would be standing on much steadier ground today. If I had kept listening to the neurologists, I would have been permanently wheelchair-bound long ago, completely incapable of writing this book.

At this stage, a quick disclaimer: this book is written specifically for people carrying a "multiple sclerosis" diagnosis. I will be using patient jargon and won’t stop to define terms that are self-evident to us but gibberish to outsiders. If you are reading this out of pure curiosity, I highly recommend my first book instead—you’ll likely find it a much better read. In fact, some of my favorite reviews came from people who don't even have MS, and one reader actually compared that book to Edith Eva Eger’s The Choice. Consider yourself warned: I wrote the first book to be entertaining; I wrote this one to be useful.

For those who already know me, feel free to skip the next few paragraphs. For the newcomers—let’s get introduced. My name is Sergey, I’m 37 years old, I live in Moscow, and a few years ago, my life was violently derailed by multiple sclerosis. To give you an idea of how aggressively it hit: in September 2020, I was playing competitive tennis; by March 2021, I could barely walk. The punchline? For those six months, I consulted multiple neurologists, and every single one of them insisted my issues were caused by a microscopic hernia in my lumbar spine.

The correct diagnosis was only caught because a neurosurgeon flatly refused to operate on that hernia—he was certain it was harmless—and because my left hand had begun to fail. That's right: a string of medical professionals, including three trained neurologists, stared at my chart with profound academic expressions, entirely blind to a textbook case of multiple sclerosis unfolding right in front of them. However, I don't think these doctors were below average—in fact, there is a very good chance yours are no better.

To "modify" my disease, Moscow’s top MS specialists put me on Roche’s Ocrevus—at a staggering 635,000 rubles per dose. I kept getting worse. That was when I first encountered the classic pharmaceutical excuse. A neurologist at the MCMS told me that I felt terrible because "Ocrevus takes three to four months to kick in." It was a blatant stall tactic, hoping the "relapse" would naturally burn itself out. After my second 635,000-ruble infusion, when my body deteriorated even further, the exact same doctor looked me in the eye and said, "Without Ocrevus, you’d be in much worse shape."

Another six months slipped by. I endured a bizarre course of "transcranial magnetic stimulation" under a famous professor, experimented with the useless Coimbra protocol (massive doses of Vitamin D3) and the Wahls miracle diet, received my third dose of Ocrevus, and lost the ability to even step outside my apartment. Desperate, I signed up for a suspicious-sounding treatment using stem cells. What I witnessed at Maksimov’s clinic completely flipped my perspective, and I decided to do something I never intended to do: write a book. I became one of the first 5,000 people globally to completely halt multiple sclerosis through a punishing but profoundly effective procedure: HSCT (High-Dose Immunosuppressive Therapy with Autologous Hematopoietic Stem Cell Transplantation).

The unit was helmed by Professor Denis Fedorenko. Interestingly, out of the 15 to 20 patients on the ward, I was the only Russian citizen. Why? Because the Russian Ministry of Health does not officially recommend stem cell transplantation as a therapy for MS, and doctors in state hospitals are bound to the bureaucratic party line. To be fair, most of them parrot this stance not out of administrative obligation, but out of genuine, unvarnished ignorance.

The most surreal part of Pirogov Hospital was watching European Union citizens buy specialized medical tours to a Moscow locked in an intense patriotic frenzy, paying 50,000 to 60,000 euros through international agencies. Meanwhile, for Russian citizens, the entire procedure cost 1.2 million rubles. Some of these foreigners arrived with walkers or in wheelchairs, traveling halfway across the world to receive a treatment that our own Ministry flatly rejects and which my neurologists had terrified me away from. The demand was so massive that I had to wait nearly six months just to secure a bed.

The moment Dr. Fedorenko looked at me and said, "You no longer have multiple sclerosis," I felt a burning need to share this reality with my peers. That’s how my first book, Multiple Sclerosis: My Medical History, came to life. Once it hit the shelves (published by AST, fully mainstream), I posted a brief announcement in an MS patient group on VKontakte. I wanted to scream from the rooftops about what had wasted my time and what had actually saved my life. I genuinely believed my book would rescue people from wasting years on useless drugs. The actual response from the patient community was a rude awakening.

The comments immediately fractured into two warring factions. The supporters cheered me on, praised the excerpt, and promised to buy the book, viewing my survival as an inspirational feat. They didn't even care what the book was actually about—to them, simply surviving MS was enough of a reason to celebrate. After reading it, many reached out asking for the number of Nastya, the professor’s secretary. Some were hearing about HSCT for the very first time, but even those who had heard of it possessed a version of the facts that was entirely divorced from reality, thanks to their neurologists.

The second, much larger camp was openly hostile. These people couldn't understand why I had written the book in the first place—they didn't see our shared diagnosis as an appropriate topic for public discussion. When I pointed out that the second half of the book detailed a treatment that had stopped my disease cold—the very treatment everyone had warned me against—the vitriol only spiked. I was utterly bewildered.

The truth only clicked after months of arguing in the trenches of social media. I became a fixture in those VKontakte groups, losing hours in endless comment wars. I am now permanently banned from several of these communities because the administrators convinced themselves I was taking under-the-table kickbacks from the Maksimov clinic. After six months of this, I finally achieved a cynical clarity: most of these vocal patients hadn't yet experienced the true physical toll of the disease, leaving them utterly convinced that their "DMTs were holding them." They couldn't understand the purpose of aggressive chemo or transplants because their sclerosis hadn't truly shown its teeth yet. Worse still, a terrifying percentage of them didn't have multiple sclerosis at all.

What Is This Book About?

The blueprint for this book came together slowly. After my transplant, I watched patients online and felt like I was watching people play a game with rigged, shifting rules: lines of therapy, drug rotation, relapses, remissions, tracking "active" versus "inactive" lesions, steroid pulses, and disability scores. What baffled me most was why the rules had more exceptions than constants. What does it actually mean when a drug "doesn't suit" a patient? Why do steroids suppress relapses for some but fail others entirely? What are "courses" of the disease—are they distinct variants, or just different masks the same enemy wears as it ages? Only one conclusion held water: the underlying model of MS therapy is entirely broken. When a theory requires constant patches, amendments, and excuses to match reality, the answer is always the same—the theory is simply wrong.

I realized this long ago, but the million-dollar question remained: why does everyone else still believe it? Hundreds of thousands of patients, thousands of doctors, pharmaceutical giants, regulatory bodies—everyone clings to a broken playbook riddled with contradictions. Was I the crazy one, or was it the rest of the world? If the world was wrong, how did a collective delusion of this scale become institutionalized? Why is everyone blind to the total mismatch between theory and clinical reality? Where exactly did the playbook run off the rails, and why do patients not only buy into this defective model but aggressively police and defend it online?

The internet was an echo chamber of useless platitudes: "the disease with a thousand faces," "everyone needs a tailored DMT," "every journey is unique." Everyone seemed perfectly content with explanations that explained nothing. But surely, someone had to know the truth! At the Maksimov clinic, the physicians clearly operated on a completely different level than my old MS specialists. Why does the entire medical apparatus stick to a defective theory when daily clinical practice completely contradicts it?

In 2024, Alpina published Dan Ariely’s Misbelief. The professor detailed a surreal experience on Telegram: roughly 100,000 otherwise rational adults were actively discussing how he and Bill Gates had manufactured the COVID-19 pandemic to implant microchips via vaccines and control the population through 5G towers. Ariely was branded a Mason, a reptilian shadow-lord, and an architect of a dystopian global agenda; some compared him to Goebbels and demanded his execution. Dumbfounded, Ariely joined the channel, introduced himself, and offered to answer any questions, since he obviously had nothing to do with the Illuminati or cellular towers.

He couldn't sway a single mind. People clung to their delusions, utterly immune to logic, evidence, and common sense. As a scholar of human irrationality, Ariely dissected this descent into madness, coining the term "the funnel of misbelief." The funnel maps out four distinct stages—and it bears a terrifying resemblance to the psychological pipeline an MS patient falls into the moment they get their diagnosis. That was the moment I realized it was entirely possible for me to be right while the rest of the world was trapped in a collective illusion.

So, this book is about multiple sclerosis. In the first chapter, we will strip down blood, hematopoietic stem cells, lymphocytes, and their receptors. A basic grasp of how the immune system actually functions will show you exactly where multiple sclerosis and other autoimmune conditions originate. I am certain you’ve heard a dozen different theories about what causes MS—and most of them manage to be simultaneously right and wrong. The second chapter tackles diagnostics, tracking progression, and the core machinery of the MS treatment system, revealing why this diagnosis is botched so frequently. You will also see how the classic paradigm of "relapses and remissions" is finally beginning to crack, albeit for economic rather than purely scientific reasons. By the end of Chapter Two, you will know exactly how many faces multiple sclerosis actually has.

Next, we will put first-line DMTs—interferons and glatiramer acetate—under the microscope. We’ll trace their origin story, which explains not only their global dominance but also why they appear to work for some while failing others completely. From there, we move to a chapter that breaks down the modern rules of the MS treatment game with a healthy dose of irony—answering the exact questions you’ve whispered to yourself but were too terrified to ask your doctor. I’ll map out in plain English why MS looks so radically different from one patient to the next.

Chapters Six and Seven expose second-line DMTs, both oral and infusion therapies. We will dissect how they actually work, their real-world limitations, their toxicities, and the clinical trials used to fast-track their approval. It’s not rocket science, and by the end of it, you’ll understand these drugs better than most. I firmly believe patients must actively dictate their own therapy rather than blindly trusting a white coat. Right after DMTs, we confront the holy grail: stem cell transplantation. The purpose of this chapter is to give you a crystal-clear understanding of how HSCT works and why comparing it to standard DMTs is a logical fallacy. I want to demystify the transplant and strip away the fear—because as of today, medicine has found no other way to actually stop this disease.

Chapters Nine and Ten dive into the psychological warfare of multiple sclerosis and the lives of patients who were diagnosed by mistake. We will dismantle the cognitive traps that ensnare almost everyone with an MS tag and look at the bizarre history behind the terms you use every day. Chapter Nine applies Ariely’s funnel of misbelief directly to the MS experience, while Chapter Ten unpacks my own concept of multiple sclerosis as a "social marathon."

Throughout the book, you will encounter the raw stories of real patients, complete with their actual contact info—do not hesitate to reach out and ask them anything. I’ve also injected brief historical and medical deep-dives to give you a complete view of the MS landscape, revealing the structural flaws of modern therapy.

I sincerely hope this book answers the questions keeping you up at night and exposes the real rules of this brutal game. In games like this, the only way to win is to know how the board is actually rigged.