Сергей Пузанов – Multiple Sclerosis. Everything you need to know (страница 14)
This logic is simple, understandable, and incredibly streamlined for the medical bureaucracy. Burning MRI lesions and the number of relapses can be counted on a spreadsheet, and remission windows can be measured in months. Yet, all of this is nothing more than statistical noise that doesn’t match the actual biology of the disease. The destructive processes launched by lymphocytes that forced their way into the brain do not grind to a halt just because lesions stop glowing or symptoms back off. The brain's neuroplasticity plays a cruel trick on patients: the dismantling of myelin rolls on, but if it fails to trigger brand-new symptoms or visibly worsen old ones, the system logs it as a "remission". It is precisely because of how the medical grid defined these terms that patients continue to lose neurological functions during total clinical silence. Patients need to remember that remission means the silence of symptoms, not the stoppage of destruction.
The brutal truth is that without aggressive intervention, multiple sclerosis never enters a biological remission. The disease keeps marching—slowly, smoothly, without any dramatic flare-ups. Can anyone actually notice their right leg losing 0.5% of its strength over the course of a month? Can you feel your left hand becoming 4% less coordinated over a year? Vision in the right eye dropping by a fraction of a point over two years, an uptick in urinary urgency, or coordination slipping slightly over recent months—all of this, unfortunately, flies completely under the radar. The bulk of nervous tissue destruction happens smoothly, completely outside the relapses defined by the system. It is during these exact windows of calm that irreversible damage accumulates in the brain.
Yet, the system prefers to deal with discrete, punchy events. Relapses are easy to count, and remission can be packaged as concrete proof that a therapy is working. When a patient is told that "there are no relapses," "the MRI is stable," and "the disease is in remission," it manufactures a comforting illusion of control. This happens not because it maps reality, but because it can be measured and logged on a chart. We are far too used to trusting numbers and metrics, and this is the root of a massive problem in MS treatment. The smooth, gradual progression of the disease is impossible to track on a standard checklist; it falls completely outside the definitions of relapses and remissions. As a result, neurodegeneration happens invisibly to doctors, leaving fading patients completely alone with their suspicions.
If a patient believes the disease only advances during relapses, they are hemorrhaging priceless time—the neurodegeneration process doesn't hit pause during remissions. If a patient thinks that after a course of hormonal steroids the disease has gone on vacation, they are dead wrong. The autoimmune loops triggered inside the brain tissue keep gnawing away at the myelin insulation. Only when a patient understands that the pathological process is running 24/7 do they gain a chance to act intentionally. The most terrifying thing about multiple sclerosis isn't the relapses—it’s what happens between them.
On "Extinguished Demyelination Lesions" on MRI Results
So, a burning spot on an MRI screen is not always multiple sclerosis. Contrast hotspots simply map zones where an inflammatory process has breached the structural integrity of the blood-brain barrier—cracks form in the vessel walls, and gadolinium leaks out into the brain tissue. Sometimes this is the footprint of budding demyelination, sometimes it isn't: a breached barrier can be triggered by dozens of conditions, including chronic stress and severe depression. It’s critical to realize that if "wrong" lymphocytes are absent from your bloodstream, a leaky barrier will never translate into multiple sclerosis. Lymphocytes don't just need to breach the brain—they have to get inside and mistake myelin for an enemy. In other words, Radiologically Isolated Syndrome (RIS) is far from an absolute death sentence or a guaranteed precursor to MS.
Unfortunately, the exact reverse is also true: "extinguished" demyelination lesions do not mean multiple sclerosis has entered remission. Even after pulse therapy, when a patient experiences a surge of energy and lesions stop accumulating contrast, the disease keeps dismantling brain tissue. The lymphocytes that dug into the brain linings view myelin as their ultimate target, and they see it everywhere. Since the enemy is all around them, they fight: they don't just riot themselves; they coordinate the local immune response, and macrophages systematically devour the myelin sheath layer by layer. Lymphocytes have zero reason to leave the brain—they have already found exactly what fits their receptor.
This is where the most dangerous misconception regarding MS hides. When an MRI fails to show active lesions and symptoms back off thanks to the brain's neuroplasticity, patients sincerely believe that "the disease is in remission" and "the drug is holding". The majority are convinced that the destruction of brain tissue only occurs during active relapses—assuming that immunity attacks the nerves in bursts, cutting off signals. Yet, very few stop to think about the actual biology of this process. A "relapse" is viewed as an explosion of the disease, and "remission" as a total ceasefire. If a patient is using a DMT during a window of calm, they credit the medicine for the remission, and when a relapse strikes, they declare that "the DMT stopped holding". The baseline condition that "the drug was holding" and that it deserves the credit for the calm is a dogma that is never up for debate.
Well, the truth is far less comforting: if after a few years of taking a drug you experience a relapse, it actually means the drug failed to protect you from it, even if it was working. The relapse occurred because immune cells had been quietly devouring your myelin over a long stretch of time. The nervous tissue kept degrading, but as long as the brain managed to compensate for the damage through neuroplasticity, you felt zero symptoms. At some point, the "neurological reserve" topped out, and the symptoms broke through—sometimes smoothly and invisibly, sometimes in a sharp flash. The main thing you need to grasp is that the destruction of nervous tissue doesn't just happen during relapses; it happens continuously. A relapse is the breakthrough of symptoms, not the awakening of the disease. On the contrary, sclerosis was working overtime the entire time leading up to that relapse.
The core of the issue is that everyone has been trained to measure MS activity entirely by the number of burning lesions. If there are no contrast spots, the disease is logged as being in remission—even if the patient's symptoms continue to intensify. In reality, a demyelination lesion doesn't accumulate contrast forever. Over time, the autoimmune process dug deep into the brain tissue and stopped disrupting the blood-brain barrier. The healing of the vascular wall doesn't mean demyelination has ground to a halt. For example, shortly after pulse therapy, lesions stop burning—yet this doesn't mean the autoimmune process has been snuffed out. The wall is patched up, but the troublemakers who managed to slip through the gate keep rioting, exactly like the anime
On the EDSS Scale and the Room for Statistical Miracles
The first scale engineered to measure the status of multiple sclerosis patients was rolled out back in 1955—back then, it was tagged as the DSS, Disability Status Scale. Its creator, John Kurtzke, was an American neurologist working at a US Veterans Affairs hospital. By an ironic twist of fate, we owe the creation of the primary tool for measuring MS progression to a medical error born out of a total accident. Multiple sclerosis is surrounded by misconceptions on all sides, and measuring the degree of disability is no exception.
In the early 1950s, Kurtzke and his colleague Louis Berlin were testing the efficacy of an anti-tuberculosis drug called isoniazid for treating MS. Isoniazid is a highly specialized antibiotic: its sole mission is hunting down the mycobacteria responsible for tuberculosis. How did such a wild idea even enter anyone's mind? It all came down to pure chance: a World War II veteran with multiple sclerosis was admitted to the hospital for tuberculosis, and after being put on isoniazid, his slurred speech suddenly cleared up and his tremors backed off. In Kurtzke’s defense, autoimmune diseases hadn't been mapped out yet; the medical world was hunting for a hidden virus or bacteria driving MS.
Spotting the anomaly, Kurtzke and Berlin ran a pilot test. The results looked promising, and the VA decided to launch a massive trial across 11 hospitals nationwide. To ensure that dozens of doctors in different wards measured shifts in patient conditions by a unified metric, Kurtzke engineered the 11-point DSS scale. Isoniazid flunked the audit: its temporary positive effect on MS turned out to be the byproduct of the natural fluctuation of the disease. The DSS, however, didn't just survive; it flourished. In 1983, Kurtzke updated the metric with 0.5-point increments, transforming the tool into the Extended Disability Status Scale (EDSS). This expansion turned the scale into an ideal instrument for statistical illusions: the EDSS score became a key clinical endpoint in every single DMT trial.