Сергей Пузанов – Multiple Sclerosis. Everything you need to know (страница 2)

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.