Сергей Пузанов – Multiple Sclerosis. Everything you need to know (страница 3)

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.

A Quick Cheat-Sheet of Simple Terms

The primary reason a mountain of myths has suffocated multiple sclerosis is the sheer slippage and ambiguity of medical language. What do "relapse" and "remission" actually mean inside this disease? What does "absence of confirmed disability progression on the EDSS scale" translate to in real life? What are patients actually saying when they claim a drug is "holding"? Before we pull back the curtain on sclerosis and the chemicals that allegedly "modify its course," we need to pin down what these words mean within modern neurology.

Furthermore, I want this book to be completely accessible to anyone, not just patients and their doctors. Before diving into the deep end, here is a quick, unvarnished dictionary of terms that will keep popping up. These definitions match what you’ll find in medical textbooks and pharmaceutical brochures, even if the reality is vastly different.

Multiple sclerosis — A chronic autoimmune condition triggered by a systematic malfunction in the body's defenses. Even though lymphocytes act as the primary saboteurs in the pathogenesis, the medical establishment classifies it as a brain disorder, leaving it firmly in the hands of neurologists.

Neuron — A brain cell responsible for transmitting electrical impulses. The human brain houses roughly 86 billion of them; the spinal cord holds about 13 to 14 million.

Axon — The long projection of a neuron that functions exactly like an electrical wire, linking one neuron to another. To ensure the electrical impulse reaches its destination without short-circuiting, the axon requires insulation.

Myelin — The insulation wrapping the axon. In the central nervous system, this protective winding is produced by specialized cells called oligodendrocytes. Specifically, myelin is an extension of the oligodendrocyte’s own cell membrane. A single oligodendrocyte wraps its insulation around dozens of different axons.

Demyelination lesion (Hotspot) — A localized area in the central nervous system where immune cells strip the insulation off the wires. On a contrast-enhanced MRI, "active" hotspots flare up as bright, burning white dots.

Relapse — The sudden worsening of old symptoms or the appearance of entirely new ones, lasting at least 24 hours. Relapses are traditionally tied to the appearance of those burning dots on the scan, which doctors interpret as active demyelination.

Pulse therapy — A high-dose blitz of intravenous corticosteroids. Both doctors and patients operate under the assumption that a steroid pulse can "extinguish" a relapse and put the disease back to sleep, ushering in a remission.

Remission — The phase where multiple sclerosis is allegedly dormant. It is defined by flatlining disability scores, an absence of new symptoms, and a quiet MRI scan. The entire system is built on the myth that MS neatly alternates between active relapses and quiet remissions.

EDSS — A crude, step-based scale used by neurologists to measure a patient’s level of physical disability. It serves as the primary metric for proving whether a Disease-Modifying Therapy (DMT) is effective.

DMTs (Disease-Modifying Therapies) — The global arsenal of drugs marketed for MS. The dominant narrative promises that the "right" DMT will lock the disease in perpetual remission and shield you from future attacks.

CSF (Cerebrospinal fluid) — The specialized fluid that cushions the brain and spinal cord. In a healthy body, it contains almost zero blood cells due to the heavy security of the central nervous system's protective barriers.