By sharing the story of multiple sclerosis, you can hopefully gain insight into just how far we have come in understanding this complex disease—especially in the last 20 years—and even give you a glimmer of hope for what may be to come.
Early Stories of Probable Multiple Sclerosis
One of the first written reports of multiple sclerosis was detailed in the Vatican archives in the 14th century. In the archives, the symptoms of Saint Ludwina of Schiedam were described after she experienced a fall from skating at the age of 16.
She recovered partially from the fall but continued to have episodes of leg weakness, vision problems, and loss of balance. Interestingly, her parish priest suggested that this illness came from God, so Saint Ludwina made it her mission to endure the symptoms for the sake of others.
About 300 years later, descriptions suggestive of MS were found in the diary of Sir Augustus Frederick d’Este, the grandson of King George III of England. He wrote about a relapsing-remitting disease course in which he experienced bouts of neurological dysfunction like vision problems (believed to be optic neuritis), double vision, leg weakness, and bowel and bladder problems.He then described a more progressive disease course, which eventually left him bed-bound until his death in 1848 at the age of 54.
In 1824, the first modern clinical description of MS was reported by Dr. Charles-Prosper Ollivier d’Angers. In his written work, he described a 17-year-old boy who experienced episodes of walking and bladder problems that were worsened by exposure to a hot spa—now known as the Uhthoff phenomenon
In 1868, Jean-Martin Charcot, a neurologist from Paris, studied a young woman with tremors, slurred speech, and abnormal eye movements (called nystagmus). When this woman died, he examined her brain at the autopsy and described the “plaques” of multiple sclerosis, also known as scars or lesions.Then, in a series of lectures, Charcot defined and described multiple sclerosis and the science behind it—how the myelin that surrounds nerve fibers is damaged. Still, though, he was perplexed by the “why” behind MS or how to treat it.
We now know that the immune system is the culprit behind myelin damage in MS. However, at the time of Charcot, people did not know MS was an immune-mediated disease or that the immune system even existed.
Even though scientists and doctors were baffled by MS, it was officially recognized as a distinct disease in 1878. During this time, scientists began noting a number of MS characteristics that are key features today, like:
- MS is more common in women than men.
- MS is a variable disease (meaning people with MS have unique symptoms).
- The environment (in addition to genes) plays a role in whether or not a person develops MS.
- MS is more common in people who live at northern latitudes.
Advocacy and Research in Multiple Sclerosis
In 1945, a woman named Sylvia Lawry placed an advertisement in the New York Times (her brother Benjamin had MS) stating “Multiple sclerosis: will anyone who has recovered from it please communicate with patient.”
A large number of replies inspired her to start an organization of 11 neurology leaders and other advocates and friends, called the National MS Society. Lawry’s work paired with the National MS Society then sparked the formation of the National Institute of Neurological Disorders and Stroke in 1950.
With the formation of these influential groups, research on MS flourished. Here are some research findings and ideas that evolved during the mid-1900s:
- the composition of myelin and its role in nerve signaling
- the relationship between a person’s immune system and their brain and spinal cord (and that MS was an immune-mediated disease)
- the discovery of oligoclonal bands in the spinal fluid of people with MS
- the idea that a virus could trigger or be involved in the development of MS
- the discovery of genes linked to MS
- the formulation of guidelines to diagnose MS
Still, at this time, MS treatments were not studied scientifically, meaning they were derived from opinion and not data from studies. For instance, many experts at the time believed that MS stemmed from a blood vessel problem, so people with MS were treated with blood thinners.
The First MS Scientific Study
Finally, in 1969, the first controlled study on people with MS was completed. In the study, participants experiencing acute MS relapses received either ACTH or a placebo. ACTH is a hormone that is normally released by the pituitary gland (a small pea-sized gland in the brain). It stimulates the production of steroids, which work to suppress a person’s immune system
Results revealed that the group who received ACTH versus those who received a placebo had a faster recovery from their MS attacks. This study was paramount in revealing that steroids could reduce the inflammation of an MS relapse. That being said, steroids do not slow down the progression of MS.
Imaging of Multiple Sclerosis
Imaging tools soon developed that allowed doctors to better visualize MS disease activity. These included the first CAT scans in the late 1970s, followed by evoked potentials, and, finally, MRIs used for the first time in the early 1980s to visualize the brain of a person with MS. MRI technology has continued to evolve immensely and has revolutionized both the diagnosis of MS and determining how well a person is responding to treatment.
Treatment of Multiple Sclerosis
With the sophisticated advances in imaging came studies on MS therapies. These therapies, known as disease-modifying medications, have been found to reduce the number and severity of MS relapses—although not cure MS or prevent persistent symptoms like fatigue or sensory problems that often come and go in people with MS. Such therapies include:
- The first disease-modifying injectable medication, called Betaseron (interferon beta-1b), was approved in 1993. It was followed by Avonex (interferon beta-1a), Rebif (interferon beta-1a), and Copaxone (glatiramer acetate).
- In 2006, the first infused therapy was approved for MS called Tysabri (natalizumab).
- In 2010, the first oral MS medication was approved, called Gilenya (fingolimod), which provided an option for people who could not tolerate medications that needed to be injected or for people whose MS continued to worsen despite interferon therapy.
- This was followed by the approval of two more oral medications, Aubagio (teriflunomide) in 2012 and Tecfidera (dimethyl fumarate) in 2013.
- In 2014, another infused disease-modifying medication called Lemtrada (alemtuzumab) was approved for people who had an inadequate response to two or more other disease-modifying therapies.
- In 2016, Zinbryta (daclizumab), another injectable medication was approved.
- In 2017, Ocrevus (ocrelizumab) was approved to treat not only relapsing forms of MS but also primary progressive MS—the first MS therapy to do this, which is encouraging.
The Future of Multiple Sclerosis
The future of MS is bright, as experts continue to fine-tune their knowledge and broaden their research ideas. One huge area of research currently occurring is the study of myelin repair. While therapies in the last 40 years have targeted the immune system and how myelin damage can be prevented, experts are now looking into how the brain can restore myelin once it has been damaged—a truly novel perspective on healing.
Other exciting research prospects include the role of diet, gut bacteria, vitamin D, and genetic mutations in MS. Also being considered is how complementary therapies, like yoga, can help a person manage their symptoms better.
Finally, experts have discovered ways to help people with MS live more comfortably. From rehabilitation therapies that help people strengthen muscle tone after a relapse to exercise programs that help people combat MS-related fatigue, many people with MS and their loved ones are able to live well with this disease—a remarkable accomplishment on its own.
A Word From Verywell
The story of MS will continue, as the twisty, curvy path of understanding this complex disease and all its nuances and mysteries is still ongoing. But the progress that has been made in the last 20 years is immense. And with that, there is hope—an optimism held by those who experience MS every day and who know that a cure will arrive one day, if not for us, than for those after us.