A Portable History of MS
Ever wonder how far back in time people had MS? What they thought about it, and how they treated it?
Naturally, our knowledge about MS in times gone by is heavily reliant on a written historical record. That automatically leaves out everything prior to about 3,000 years ago. Numbering and hieroglyph systems evolved in Egypt around 3200 BCE. Aside from the discovery of the Edwin Smith scrolls, fragments of medical journals written c. 2500-1500 BCE, all we have to go on as far as possible neurological problems among those ancients are wall drawings depicting the merchant class being carried around on litters borne by slaves. We can only guess at how many of that pampered 1% got toted around because they had a demyelinating disease, and how many were just feeling lazy and entitled and didn’t want to dirty their sandals slogging through the mud of the Nile.1
Ancient Greece, on the other hand, presents an interesting puzzle. All diseases known to the Western world in 4th century BCE were methodically recorded by Hippocrates (460 BCE – 370 BCE). Yet there were no references to symptoms that resembled MS.
In early 19th century Greece, however, MS symptoms were most definitely known and recorded. One environmental factor attached to this phenomenon was that Greeks, along with other cultures around the world that engaged in dairy and cattle farming, were consuming cow’s milk instead of the goat’s milk their ancestors had consumed back in Hippocrates’ time. Some modern epidemiologists’ studies suggest that MS first appeared among those cultures, leading them to conclude—perhaps erroneously—that MS is a modern disease and that the advent of it might be connected to dairy consumption.2
Most disease historians point to the case of Augustus d’Este (1794-1848), a grandson of England’s King George III, as the first recognizable and fully documented case of Multiple Sclerosis. Augustus himself kept copious notes of his symptoms in his personal journals. At age 28, he developed optic neuritis. He eventually slid into secondary progressive MS with paralysis, incontinence, urinary problems and impotence. His treatments by physicians reflected the doctoring of the time, limited to blood-letting with leeches, rest, hydrotherapy, and dietary regimens.3,4
Nevertheless, a 14th-15thth century Dutch saint named Lidwina of Shiedam (1380-1433) is considered by some historians to be the earliest documented account of what was possibly a severe case of MS. Unlike the aristocrat Augustus d’Este, Lidwina was likely illiterate, so accounts of her symptoms are only described in Johannes Brugman’s hagiography of saints c. 1498.
Suffering from headaches, pain, gait problems and paralysis, Lidwina worsened over time and also had periods of remission. A pious girl in her adolescence, Lidwina had a nasty fall while skating and broke several ribs, causing an onset of neurological symptoms, gangrene, profuse bleeding, and holy visions, which marked her as both a vessel of the Lord and a receptacle of evil spirits. Lidwina regularly practiced and gained notoriety for her voluntary food and sleep deprivation, and during one military invasion by the French, a guard was sent to authenticate her fasting. Unfortunately, several soldiers also visited the ailing Lidwina and raped her, later claiming that her swollen appearance was the result of sexual relations with the local priest. We girls just can’t catch a break, can we?
Saint, sinner, sufferer, victim, harlot, Lidwina endured a passel of trouble to become the patron saint of chronic illness and skating. So if you have MS, you’re an ice-skater, and you’re a praying person, Saint Lidwina has your back. 5,6,7
Ever wonder how our disease got its name? The term Multiple Sclerosis comes from the Latin multus plus plica meaning "fold," and the Greek sklerosis meaning "hardening." Many folds hardening. Sounds more like a description of the dirty laundry fermenting in my hamper!8
A version of this moniker was first coined by the Industrial Age’s most influential practitioner of the neurologic medical arts. (If you’re guessing it’s Rasputin, guess again.) This specialist was not only a pathologist, he was also a skilled illustrator with a keen eye for detail, an ideal background for observing the nuanced differences among the many neurological diseases.
Give up? He was a 19th century French pathologist named Jean-Martin Charcot (1825-1893). Hailed as the father of modern neurology, Charcot was one of the first pathologists (along with his predecessors Robert Carswell and Jean Cruveilhier) to study the condition in depth via clinical observation and autopsy, and credited as the first to elegantly describe the pathology of MS in the brain and spinal cord in 1867.9,10
For years, Charcot carefully studied a woman with MS symptoms and tried some innovative treatments that included injecting silver, which was a popular syphilis treatment, and mild electrocution. You can probably guess how that went over. After a few shock treatments, the poor woman probably went over pretty hard. But hey, ya gotta start somewhere, and Charcot was a man who finished what he started.
In 1868, getting nowhere with these treatments, Charcot then performed a dissection of her brain. Fortunately for her, he performed it after she died. It was the least he could do after poisoning her with silver nitrate and torturing her with a primitive cattle prod. His journal entry about the autopsy I shall now paraphrase:
"Sacre bleu, sclerose en plaques!” Loosely translated, it means: “Holy crap, slicing up dead brains is icky, I almost threw up in my mouth. I find what looks like hardened lesions in the squishy stuff around the ventricles—so that’s what I’ll call it: sclerose en plaques.11
Brillant, bien sûr!
Charcot was also a teacher who instructed the likes of Sigmund Freud and Joseph Babinski. That’s right, the Sigmund Freud. Bear in mind that all neurological diseases were lumped together under one banner in the 19th century. So, in France, severe cases of mental illness, hysteria, epilepsy, syphilis, neurological disease, et al, were thrown into the Pitié-Salpêtrière Hospital in Paris along with the very poor. Originally built to be a gun powder factory (hence the reference to saltpeter), it ultimately functioned as a sort of catch-all insane asylum/poor house until Charcot turned it into a teaching hospital in the 1880s. It must have been quite an explosive environment. 12,13
So back to Charcot’s familiar-sounding students. If the name Babinski rings a bell, it should. First reported in 1896 by Joseph Babinski, the Babinski reflex occurs when your neuro uses a hard object to firmly stroke the sole of your foot. If your big toe moves upward and your other toes fan out, you’ve got the Babinski reflex.14
When Babinski presented his paper on this phenomenon, he emphasized the observation that this reflex suggested spinal cord damage and did not occur in cases of hysteria.15
And while we’re on the subject of hysteria, let us move on to Freud and his contribution to modern neurology. Early in his career in the 1880s, Freud earned his M.D. and pursued neurological studies of cerebral palsy, brain damage-incurred speech problems and neuroanatomy. In 1885-6, he studied with Charcot at the Pitié-Salpêtrière, where both became intrigued with hypnosis and hysteria cases. Freud was so enamored of hypnosis and psychological illness that he abandoned neurology study and pursued what would become psychotherapy and modern psychology/psychiatry.
His focus included cases of female hysteria, in which women exhibited partial paralysis, anxiety, the sensation of being suffocated, tremors, and convulsions. Freud’s opinion of its origin somewhat reflected those of his ancient Greek predecessors, who believed that women who have inadequate sex lives are prone to developing a “wandering womb” and should engage in Bacchanalian orgies and drink wine to return that womb to its proper place. Later on, during the Middle Ages and the Renaissance, on the other hand, hysterical women were considered possessed by evil and were sometimes burned at the stake. In the late 19th century, Freud and his peers believed that female hysteria could only be cured by masturbating the patient and inducing orgasm, and in talk therapy, by revealing the woman's unconscious loneliness and guilt that stemmed from playing a passive and restrictive role in relationships and society.16,17
Apparently, attitudes towards women and illness hadn’t advanced much since Saint Lidwina’s time. How do you cure a sense of powerlessness in a patriarchal culture? Why, by having a patriarch exert his power over your genitalia, of course. Our 19th century sisters couldn’t catch a break, either!
I know what you’re probably thinking right now: What has this to do with Multiple Sclerosis? I’m getting there, I promise!
During the 19th century, hysteria had been a catch-all diagnosis for a hundred different symptoms which included paralysis, numbness, mood disorder, pain, and digestive problems. Over the next century, depression, anxiety, migraine, and conversion disorder (formerly known as hysteria)18 would become better understood clinically, some identifiable via autopsy, and later, with brain scans. In the 20th century, conversion disorder, migraine and mood disorders would number among the differential diagnoses for Multiple Sclerosis and other autoimmune diseases.19
The upside of this is that psychological disorders are better treated now and can be distinguished as secondary conditions to illnesses such as MS, stroke and heart disease.
The downside is that many neurologists and internists still use conversion disorder (hysteria with physical symptoms) as a catch-all diagnosis for patients who are having their first MS attack. Many of us can attest to this first-hand, running the gauntlet of doctors who dismiss our weakness, numbness and brain fog as manifestations of mere stress, panic attacks, and depression, including yours truly.
My own anecdotal evidence sounds the echoes of Victorian-era attitudes towards women and illness and goes thusly:
In 1998, suffering symptoms that would turn out to be my first MS attack, I visited my PCP, who was a 30-year-old woman. I described and demonstrated my numbness, weakness, and foot drop, as well as a breathing problem that would later send me to the ER. Her first question was: “Do you ever have panic attacks?” Flabbergasted by this strange question, I denied ever having had one. “Well, I’m not going to give you steroids,” she went on, “because you came to me last month for an anti-depressant, and steroids can worsen depression.” Distressed, I voiced my concern that she wasn’t going to try to help me.
She stood over me, and wearing a look of mild contempt, chose my appointment time to express her view that women are basically hysterical, misbegotten creatures whose neurotic predispositions make it impossible for them to be taken seriously. She then turned her back on me and left the room.
Two weeks later, I saw a 65-year-old male neurologist who interviewed and tested me thoroughly. He did not offer to induce orgasm to assuage my feelings of powerlessness in a patriarchal society. Instead, he put me in the hospital for round-the-clock IV steroids and told me he was 90% sure I had MS.
‘Tis a tangled web you have woven, Dr. Freud.
I’ll conclude with the next big game changer which occurred in 1953, when Crick and Watson identified the structure of DNA. This advanced the field of molecular biology, the platform for biotechnology and its continuing advances in treating Multiple Sclerosis.20
And what does the future hold in store? Taking a look in the pipeline for the present, we see trials in progress for drugs such as benztropine, a drug used to treat the symptoms of Parkinson’s and which holds promise in performing myelin repair, and autologous stem cell therapy, which involves taking stem cells from the patient’s own marrow and injecting them into the spinal fluid, and which holds promise in regenerating myelin and reversing disability.
Future therapies will likely do a better and better job of repairing nerve damage and restoring function. But discovering that mysterious switch that will turn off the kill-all-myelin mantra seems as out of reach as the farthest, dimmest stars in the night sky. It could happen in twenty years or two hundred years.
It might gratify us to know that our own journeys with MS and its therapies are being mapped and recorded for future researchers to learn from. So, too, for historians who will, with their futuristic methods, create narratives around the smeary footprint fossils we have left in the soft mud in a time that for them will be considered “antiquity.”
For Saint Lidwina during the Renaissance, Augustus d’Este in Georgian times, and for all of us in the present, MS has been one wild ride of suffering, curiosity, bumbling misconceptions and encouraging breakthroughs. And it ain’t over yet.
Do you have a fear of needles and take medication that requires injection?