More MS news articles for Aug 2001

The Saint, the King’s Grandson, the Poet, and the Victorian Writer

Instances of MS When the Disease Did Not Have a Name

International Journal of MS Care
page 1, Volume 3, Issue 2
June 2001

Jock Murray, MD

Dr. Murray is Professor of Medical Humanities at Dalhousie University and Director of the Dalhousie MS Research Unit, Halifax, Nova Scotia, Canada. This paper is an abbreviated version of a Presidential Address to the Consortium of MS Centers’ Annual Meeting 1999 and will appear in an expanded version in a forthcoming book on the history of MS, to be published by Demos Publications, New York.

Several historical figures experienced many of the manifestations of what we now call multiple sclerosis (MS). Descriptions of their symptoms and the medical treatments of the day are discussed. While modern clinicians may argue whether these people had MS, presumed MS, or another condition entirely, the case histories of Lidwina of Schiedam, Margaret Davis of Myddle, William Brown, Sir Augustus D’Esté, Heinrich Heine, Allan Stephenson, and Margaret Gatty provide an intriguing glimpse into the history of MS, medical treatment, and the social context of neurologic illness in previous centuries.

Suggested citation: The Saint, the King’s Grandson, the Poet, and the Victorian Writer: Instances of MS When the Disease Did Not Have a Name. Murray, J. Int J MS Care [Serial on-line]. June 2001; 3(2).

"A disease does not exist until it has a name."1
—Charles Rosenberg
The observation quoted above by the prominent medical historian Charles Rosenberg makes a very important point, because we experience a disease in many ways other than biological changes. Think of AIDS, cancer, or fibromyalgia: Those diseases are experienced as much more than the biological effects. Once they are named and there is a new way of thinking about them, attitudes and responses are changed—the disease and its experiences are new and quite different from when there was only a biological effect. The disease impacts those afflicted socially, emotionally, and very personally. It impacts as well on the response of communities, institutions, and government agencies that determine how the person will experience the illness.

Clearly, people were experiencing the biological illness now called multiple sclerosis (MS) centuries before Jean-Martin Charcot gave it a name—experiencing it as a condition recognizable in that era. In those times, the people were regarded as having a chronic illness—palsy or paraplegia.

Multiple sclerosis was "framed" as a disease in the mid-19th century by physicians and pathologists in France, Germany, and Austria by defining the clinical and pathological features. They knew that the disease existed, but they probably considered it to be a rare neurologic condition.

It is instructive to examine concepts of disease in general, and diseases of the nervous system in particular, and observe how people with such illness were treated before the illness had a name. The stories of their lives, their diseases, and the therapies they received from physicians are found in medical records, biographies, diaries, and personal accounts.

The Virgin Lidwina of Schiedam

"Believe me, there is no cure for this illness, it comes directly from God."
—Godfried de la Haye, court physician, 13962

Lidwina was born on April 18, 1380 in Schiedam, Holland. She was the daughter of a laborer, and one of nine children. She was healthy and active as a child and teenager, but in the winter of 1395-1396 she developed an acute illness, of which we have few details, but from which she gradually recovered. On February 2, 1396 she was feeling well and her friends encouraged her to go skating on the frozen canal. She fell while skating and was thought to have broken ribs on the right side. Healing was slow and it was concluded that she had an internal abscess in the area of the fracture. She had difficulty walking and used furniture for support. She was described as having violent lancinating pain in her teeth, which we would now suspect was trigeminal neuralgia, suggestive of MS when it occurs in a young adult.

Her sympathetic parish priest, Father John Pot, visited her regularly and suggested she consider her pain as similar to that of the Lord. She came to believe that she was called to be a victim for the sins of others. Her suffering became a source of joy and she took steps to increase her discomfort, sleeping on planks instead of on her feather bed. Such was her joy in suffering for others that she said she would reject recovery even if it could be achieved by praying one Hail Mary.

One eye became blind, the other sensitive to light. She spent much of the time in bed, able to move only her left arm. She had an "unbearable neuritis" in her right shoulder. By the time she was 19, walking was more difficult. She developed paralysis in her right arm and her sporadic pains increased. There is mention of a split face and hanging lip, which may refer to facial weakness, but some of the descriptions suggest a deep cut down the bridge of her nose. Soon she was unable to walk and had to be carried. She also had some loss of sensation and eventually developed sores, which may have been pressure sores or decubitus ulcers.

Her suffering gained public attention. Many physicians were consulted, including the prominent Andrew of Delft. Word of her plight reached William VI, Count of Holland, and his wife Margaret of Burgundy, who sent their own physician, Godfried de la Haye. He is sometimes called Godfreid Zonderdank, or Sonderdank, but "zonderdank" is a nickname that means "don’t mention it," which he said repeatedly to the many poor who thanked him in the streets for curing them without charge.3 Godfried somberly reported that Lidwina’s illness was incurable because it came directly from God. Any attempts to cure her would just impoverish the father and would do no good, as even Hippocrates and Galen could do little in this situation.

Lidwina’s illness progressed, and she became increasingly weak. She had difficulty swallowing—first solid food and later liquids—and experienced more pain. The disease progressed slowly, with occasional periods of improvement.

Beginning in 1407, she experienced supernatural gifts, ecstasies, and visions in which she participated in the Passion of Christ, saw purgatory and heaven, and visited with saints. During these "extasies," she had improvement in her sight and was more mobile.

Although a cult was growing around her when she was alive, not everyone was so impressed. When Father Pot was replaced by a new priest, the newcomer felt she was a hypocrite, refused her communion, and asked the parishioners to pray that she might be delivered from her diabolical hallucinations. Only intervention by the local magistrates prevented him from being run out of the parish. An ecclesiastical inquiry declared Lidwina to be of good faith; she was again permitted to receive communion.

In later years many members of her family died while she was lingering in her quiet, dimly lit room. She was going blind in the last years of her life. The room, always dark, emitted such a glow that some raised the alarm of a fire. It was said that she had only communion as sustenance for the last 19 years of her life and did not sleep for the last seven years. Townspeople reported that her putrefying body gave off a fragrant perfume. These stories are difficult to credit in their extremes. Such enthusiastic, exaggerated reports and myth-building by those who revered her saintliness make interpretations of her condition difficult for the historian. For instance, the official document prepared by the municipality of Schiedam in 1421 (12 years before she died) declared that at that time she had not had anything to drink for seven years.

Her condition worsened further on the Tuesday after Easter, 1433, and she died on April 14, after 37 years of suffering. As early as 1434, a chapel was built over her grave.4 Through the efforts of Godfried de la Haye’s son, a hospital was built on the site of Lidwina’s humble home.3 A cult developed around her memory and led eventually to her beatification by the church. An ecclesiastical commission declared her experiences to be valid.5 She was said to be a "prodigy of human suffering and heroic patience."6

The first document commenting on Lidwina van Schiedam (1380-1433) was an official document, dated August 4, 1421, in which Jan van Beieren, Count of Holland, acknowledged a letter from the Schiedam local authorities about Lidwina’s disease; it further stated that he personally had seen the young woman.2 Details of Lidwina’s illness came from her biographer, the Franciscan priest Johannes Brugman (1400-1473), who acquired information from relatives, her priest and confessor, local clerics, and other "reliable persons." Fifteen years after Lidwina’s death, another biographer, Thomas à Kempis, wrote Vita Lidewigis Virginis, which was based on the information published by Brugman.6 The 1497 incunabulum T’Leven van Liedwy die Maghet van Scyedam was written by a relative of Lidwina, who had lived with her for two years. There is also a biography of Sainte Lydwine in Hubert Muffel’s 1925 volume Les Saints.3

Although some claim that the plight of Lidwina is the first known case of MS, I am more convinced that the evidence suggests elements of marked religiosity, mysticism, histrionic behavior, and even self-mutilation. Despite the possibility of some underlying neurological disease, the diagnosis must be left open.

Margaret Davis of Myddle

The delightful Antiquityes and Memoyres of the Parish of Myddle was written by Richard Gough (1634-1723) over the years 1700 and 1706.7 The author, an elderly man of the parish of Myddle, describes the parish and the objects of interest in Myddle. In a unique approach to local history, he then proceeds to take each pew in the church and discusses the persons and families who sat there. Pew 7, which adjoined the south wall of the church, was used by the family Davis, who lived in the tenement owned by Vicar Gittens. Thomas Davis, a weaver, had a wife named Margaret, who had a lameness that progressed over 20 years. I think you will agree it is a story best told in Gough’s own words.

"When hee removed to Myddle, Thomas Davis, a weaver who now lives att the Wood Lesows by Myddle Wood, came to bee tenant to it. Of him I have spoken before, but somewhat I must say of his wife; Margaret the wife of Thomas Davis dyed on the 17th of this instant, January, 1701. Shee tooke cold in childe-bearing, above twenty yeares before her death; shee was seized therby with paine and lameness in her limbs, and made use of severall remedyes for curing therof, butt all proved ineffectual. At last, as shee was in an Apothecary’s shop buying ointments and ingredients for fomentations, my uncle, Mr. Richard Baddley, an able chirurgeon, saw her and asked her how shee gott her lamenesse: shee sayd by taking cold in child-birth. Then says hee spare this charges and labour, for all the Doctors and Surgeons in England cannot cure it. Thou mayest live long, butt thy strength will still decay. After this shee went to lytle more charges, only when King James II, came his progresse to Shrewsbury, shee was admitted by the King’s Doctors to goe to His Majesty for the Touch, which did her noe good. Shee was forced to use crootches almost 20 yeares agoe, and I thinke it is now 10 yeares since shee grew so weake that shee was faine to bee carryed in persons’ armes. About two years-and-an-halfe before her death, shee kept her bedde continually; shee was bowed soe togeather, that her knees lay cloase to her brest; ther was nothing but the skin and bones upon her thighs and legges. About a yeare-and-a-halfe past, her thigh bones broake as shee lay in bedde, and one of them burst through the skin and stood out about an inch, like a dry hollow sticke, but there was noe flesh to bleed or corrupt; shee could stir noe part of her body save her head and one of her hands a lytle. When shee was dead they did not endeavor to draw her body straite, butt made a wide coffin and putt her in as shee was. I heard one say that was present att laying her in her coffin, that as they layd her downe one of her legge bones broke and gave a cracke, like a rotten sticke; and it is not to bee forgotten that the Vicar Gittens, seeing that Thomas Davis had a great charge of children, and his wife lame upon his hands, did give him his house and garden rent free while hee lived in itt."7

Gough doesn’t relate whether two pigeons came to roost on the house two weeks before death and then left, which is a superstition he describes about deaths in the parish, which he "had knowe them doe three severall times."

The unfortunate Margaret Davis was a young woman who developed a progressive neurologic disease with onset related to childbirth. It is not clear if this was in the six months after childbirth, a time when onset or exacerbation of the disease is a recognized phenomenon. She had a progressive lameness that was recognized by the doctor as one that would last a long time (but was incurable) and would progress to paralysis of her legs and then her arms. Later developments included contractures and pressure sores, and death after two decades, which certainly suggests the diagnosis of MS.

William Brown, Hudson’s Bay Trader

A case for MS can be made for William Brown, a 19th-century Hudson’s Bay trader in the Canadian West. Brown was born in Ayrshire, Scotland in 1790 and was sent by the Hudson’s Bay Company to be the company’s trader at their post at York Factory. In 1811, at age 21, he began to experience weakness in his legs and visual problems. He found it increasingly difficult to carry out some of his duties. When he felt he was too weak to withstand the rigors of a long survey assignment, he sent a replacement in his stead. For that action, he was censured by Governor Simpson. He had an intermittent and progressive disorder with visual symptoms, weakness, and gait difficulty. His symptoms progressed, he was relieved of his post, and he returned to Scotland to be cared for by his family. He died a few years later. It would be possible to develop a differential diagnosis for the condition in this young man, but certainly MS would lead the list.

Sir Augustus D’Esté

An early case of possible MS, for which there is no doubt about the diagnosis, is that of Augustus d’Esté (1794-1848), the grandson of George III and cousin of Queen Victoria. He documented his relapsing and remitting neurologic symptoms and progressive disease in his diary from 1822 to 1848 and in an almanac dated 1847-1848. His diary is a remarkable saga of medicine and therapy as practiced on the upper classes in the early 19th century and a moving story of a young man trying to understand and cope with a relentless disease.

Both the diary and almanac of Augustus d’Esté were found at the Letherhead School for the Blind during a 1940 wartime drive for paper in England. How the diaries came to be at the school is uncertain. Dr. Douglas Firth rescued the diary, which was partially destroyed by time, pilfering, and rats, and published an outline of d’Esté’s life in a paper in 19418 and in a monograph in 1948,9 using available account books, letters, and the manuscripts of d’Esté and his mother, Augusta d’Ameland. The diary is now in the collection of the Royal College of Physicians in London, which also has a file on d’Esté compiled by R. R. Hughes of Liverpool.10

Augustus d’Esté’s diary begins in 1822. On the first page he describes blurring of vision after leaving the funeral of a beloved relation. His vision deteriorated to the point that others had to read for him, but it gradually cleared without treatment. Visual blurring would recur twice over the next few years, and he consulted Dr. Henry Alexander, surgeon oculist to the Queen. The next year he had another episode of visual loss similar to the initial onset, and Dr. Spanganberg sent him to a spa at Driburg, where he "drank steel-water, bathed in it, and douched my eyes with it. My eyes again recovered."

In 1827 he complained that the heat of the country was intolerable, and he developed visual loss and double vision. In the next few years he developed numbness in his legs and difficulty walking. He consulted Dr. Kent who did not agree with the previous therapies and recommended that he "eat beef steaks twice a day, drink London porter and sherry and madeira wines." His legs were to be rubbed twice a day with brushes and his back with a liniment made of camphorated alcohol, opium, and Florence oil. Augustus was pleased to write in his diary, "This new system succeeded completely. Every day I found strength returning." This would be the hopeful observation of so many patients taking so many different treatments for MS—a disease that waxes and wanes. He continued to have his legs rubbed, but discontinued the back rubs, substituting them with slaps on the back by the open hand of a servant. He later took up horseback riding, a common therapy in the 17th and 18th century that would be revived in the late 20th century.

A Milan physician treated the pain in the area of d’Esté’s kidneys with a counterirritant plaster that was supposed to produce an eruption of the skin over the area. This was of no help, so he switched to flannel bandages as hot as he could tolerate. He took daily shower baths and a wash of zinc sulfate and aqua plantaginis. He took 20 to 30 drops of valerian twice a day mixed in the herbs and flowers. On the recommendation of his father, he saw a number of prominent physicians, including Sir Astley Cooper; Dr. W.C. Mattin, physician to the Westminster Hospital; Dr. Kent; and Mr. Pettigrew.

He followed their prescriptions and also took up sea bathing. At the seaside he developed a liaison with a young woman, but noticed that his "acts of connection" lacked a "wholesome vigor." He consulted Dr. Courtenay, who passed bougies and a metal catheter into his penis and gave him some medicines and pills that proved of some benefit. He later underwent a course of electricity, tepid douches to the loins and sacrum, and a course of Galvanism, all with disappointing results. He derived more benefit from a trip to Scotland where he was "much braced and invigorated by the Highland air." He found horseback riding and walking to be helpful. He continued the warm baths and douches and the visits to various spas.

By 1840, 18 years after the onset of his disease, he noted in his diary that he no longer used any measures for the improvement of his health or for the restoration of his vigor and strength, presumably because of disappointment with all of the previous treatments. At this point he read a book on hydropathy and decided to visit the celebrated Vincenz Priessnitz, often thought of as the leader of the hydrotherapy movement, who thought his infirmity originated in the nerves. He was treated five times over two days with the application of wet sheets and friction and walked around wearing a wet cincture around his waist. He next consulted Sir Benjamin Brodie, and a surgeon, Mr. John Scott, who prescribed tincture of Lyttae or Spanish fly, which seemed to have little effect. His prescriptions over the next few years included zinc sulfate, Spanish fly, strychnine, quinine, silver nitrate, and stramonium. Later he developed vertigo, but other than a little brandy with water, he took no medicines. Scott consulted with his colleague, John Farre, and they agreed the diagnosis was "paraplegia," a condition that can be active or passive, functional or organic, and can be "very imperceptible." They agreed that d’Esté’s paraplegia was of the passive phase that could continue for a long time in the functional form, but the transition had not yet been confirmed. Healing would require improvement in the circulation, but because the illness is in the patient (and not a result of an external influence), it can frustrate the best medical therapy. They suggested that d’Esté control his diet, keep his emotions calm, and his heart quiet. The therapy would be iron, mercury, and a period of rest at the Brighton shore.

John Scott recommended that d’Esté ride a horse every day for as long as he could, and walk as long as he could. d’Esté underwent another course of electricity, which he felt was making him worse. In February 1844, he was seen by Sir Richard Bright, who agreed with increasing the amount of iron in d’Esté’s medicine. A review of the casebooks of Richard Bright reveals two cases that might have been MS but neither of these patients was d’Esté.

By this time he was walking poorly—some days buoyed by how well he was doing, other days anxious and alarmed at how weak he was. His handwriting became shakier; many of the earlier diary sections are by an amanuensis. In 1847 he began to write in a small volume of Simpson’s Gentleman’s Alamanak and Pocket Journal for 1847. He recorded his daily visits and commented on the weather ("magnificent day out of heaven!"). On the left of the pages he evaluated church sermons, and on the right he kept a compulsive recording of the time he walked around his rooms—times to the fraction of a minute by a chronometer that he took pains to keep in good repair.

Sept. 27— "I rejoice to write that I have walked in my rooms 50 min."
Sept. 29— "Alas! I only walk in my room for 28 3/4 min."
Despite Dr. Firth’s biographical comments on d’Esté’s arrogance and immaturity in his youth, Augustus d’Esté’s diaries reveal that he is a sensitive man, dealing courageously with his failing strength, and delighting in the visits of friends and family. He worries about the health of a friend with dropsy who is so kind as to come to the door to see him, recognizing that he is unable to negotiate the stairs. He is so concerned with the plight of the Irish famine that he sends them funds, the same amount he was offered for his phaeton, in which he loved to travel, but was advised to sell. He then got around in a bath chair, but found his leg spasms and his fatigue were so marked that he was comfortable only in bed. On the last page of his diary—dated Monday, December 17—is the following entry:

"Having received a Present of Indian Moccassins I put them on—and I walk in them without my Left-Foot, which some time ago always turned outwards at the Ankle joint unless supported by a Steele-Upright, showing any disposition so to do—surely this is a decided Improvement! Thanks to The Almighty!"
Augustus d’Esté died in 1848 and was buried in the d’Esté mausoleum in Ramsgate, which he had spent a great deal of time designing with the architects. In the mausoleum there is a tablet with the details of his parents’ marriage, and the sad consequences of the Royal Marriage Act that would not allow his legitimacy. The likely reason the marriage was not legitimized was that the Prince Regent also had a clandestine marriage to Mrs. Fitzherbert, which produced two children. He subsequently married Princess Caroline. If d’Esté’s parents’ marriage was declared legitimate, then so would be the marriage of the heir to the throne, and thereby give George IV a Catholic wife, a charge of bigamy, and the children of the first marriage more claim to the throne than Queen Victoria.10

There is adequate detail in the diary of Augustus d’Esté to make a conclusive diagnosis of MS. This was a young man who developed a recurrent and remitting neurologic disease characterized by repeated visual loss, diplopia, sensory change, intermittent and progressive paralysis in his legs, bladder difficulty, and impotence. He had a remitting progressive course to death in 26 years—a characteristic picture of MS.

Heinrich Heine, Poet

Although many may not recognize the works of the early 19th-century German lyrical poet Heinrich Heine (1797-1856), his poems and songs inspired still familiar music by Schubert, Schumann, Mendelssohn, Liszt, Berlioz, and Gounod. His poems inspired two of Wagner’s operas, Flying Dutchman and Tannhäuser; Richard Strauss’ Salome; and Adams’ ballet Giselle. His poetry is admired in every language, and perhaps more in France than in his native Germany. Even England, a country he did not like very much, ranks him second only to Goethe among the great German poets.11 His reputation has provoked embattled discussion in Germany in recent times, and Sammons says his reputation was "whipsawed" in the discussion of the German-Jewish question (ie, Heine being used by both sides for their own purposes). Interest in Heine is increasing again, and although he died nearly a century and a half ago, his grave in Montmartre, outside Paris, is covered with flowers from admirers each year on his birthday.

Heinrich (originally Harry) Heine, the oldest of four children, was born of Jewish parents in Düsseldorf on December 13, 1797. Heine’s parents were not able to receive permission to marry, so he was born illegitimate. Like his mother, he had frequent migraine headaches. Despite the assistance of a wealthy uncle, his entree into business as Harry Heine and Co. went bankrupt after one year. He then changed careers and studied law. Because there was persecution of Jews in Germany at that time, and he was not a practicing Jew, he accepted baptism in 1825 and took the name Heinrich. He was politically active, with a manner that was abrasive and outspoken.12

During his 20s he suffered from severe migraines and recurrent depressions. He went to spas for relief. The neurologic illness that interests us began much later, with a transient palsy of two fingers on his left hand in 1832, when he was 35 years old. Dr. Ferdinand Koreff (1783-1851) was consulted. Two years later Heine had a bout of depression and had some visual loss from which he recovered.13 In 1837, his left arm was weaker. He had sudden bilateral loss of vision, beginning first in his right eye and then in his left, which nearly blinded him in a few hours. This improved over the next two weeks, worsened again in three months, then improved again. He had an episode of double vision six months later, followed by some worsening of his vision. He then described having giddy turns, which caused objects in his vision to vacillate, and to impart a greyish, partly silver color to them. The prominent ophthalmologist, Dr. J. Sichel, applied leeches, which improved Heine’s vision. Jellinek speculated that a fundus picture in Sichel’s successful Traité d’Ophthalmie showing optic atrophy in a 45-year-old patient may have been that of Heine.14

In 1841 Heine’s vision worsened and then improved, but he became depressed and developed more neurologic symptoms, including right facial weakness, diplopia, pain in the eye, and numbness all down the left side of his body. He complained, "Moreover the left eye is feeble and hurts, does not often agree with the right, and this causes a confusion of sight which is much more intolerable than the darkness of full blindness."15 It was said that, despite his youthful promiscuity, he became impotent soon after marriage that year to his wife, an illegitimate girl, age 19, whom he called Mathilde.

Much of the information about Heine’s illness comes from correspondence with his brother Max, a physician. During the course of his illness, Heine was treated by numerous physicians who used a number of therapies, including spas, purges, sulfur baths, bloodletting, morphine, leeches, iodine mixtures, laxatives, diets, enemas, and cutaneous ointments applied over an incision that was kept open on the nape of his neck. Although he complied with their advice, he was not very confident of his physicians or the quacks he consulted. His wife was even less happy with their recommendations. The prominent physician, Dr. Leopold Wertheim, was given a black eye and dismissed by Mathilde for his criticism of her care of Heine. In fact, she chased away all the physicians except the Hungarian Dr. David Gruby, who had arrived in Paris three years earlier from Vienna, where he had studied anatomical pathology under Rokitansky and had received his MD degree. Dr. Gruby was one of the prominent microscopists in Paris at that time, but gave up research for private practice.

In 1843 Heine developed ptosis of the left eyelid, hyperesthesia of the left side of his face, and left facial weakness. In 1844 he had three episodes of deterioration of his vision, and he was blind for a period of four weeks. The next year he became paraparetic, which kept him in bed for a period. He tried spa therapy, but his condition worsened. He described the spa bathtubs as a kind of coffin, and the baths a period of preparation for death.

In 1845 he developed bilateral ptosis, worsening gait, and further visual symptoms. In 1846 he developed numbness around his mouth, some loss of taste, and difficulty with swallowing and speech. His gait continued to worsen, and he referred to his paralysis as "like an iron band pressed into the chest"—a description of the band-like sensory level of a spinal cord lesion. The next year he had right facial paralysis, cramps, and incontinence. On September 20, 1847, he wrote from Montmorency to Princess Beliojoso that his feet, legs, and lower torso were paralyzed, and that he was unable to walk. He then made a moderate recovery, but in 1848 he described his ultimate physical collapse on his last walk, looking at the Venus de Milo in the Louvre. He felt she was looking down on him with wistful sympathy, saying, "Can’t you see I have no arms and can’t help?"

He felt he was like a fading, drooping flower, not yet completely withered. He now had paralysis of his right arm, sensory loss, neuralgic pains, dysarthria, right-sided ptosis, facial weakness, altered taste, and swallowing difficulties. In addition, he was losing weight, was constipated, and had respiratory complications. Visitors noted his muscle loss, deformed feet, and contractures. From then on he lived in a hospital, in what he called his matratzengruft (mattress grave). He said that he read every medical treatise he could find that related to his condition so that when he reached Heaven he could lecture upon the futility of physicians who tried to deal with spinal disease. In 1849 Dr. Gruby again took over Heine’s treatment, with some relief of symptoms. Periodically, a black woman would cauterize his spine to relieve his distress and pain. Remarkably, he was still writing. He described his state as:

"This living death, this unlife... my lips are paralyzed like my feet, the tools of eating are also paralyzed as well as the channels of excretion. I can neither chew nor shit, and have to be fed like a bird..."
He had pain, shock-like sensations, and was developing pressure sores. He wrote to his mother in July 1851 saying that during hot weather his eyes were worse, and he had often commented that he was better in cold weather, a pattern common in MS.

By this time he was using morphine and opium often and in large doses for his pain and spasms, but tried to keep his head clear. He called one of his poems "Morphine." Although his writing and his poems were of a high standard to the end, he was often under a "desolate narcosis" and in a "doped wilderness." On one occasion he wrote, "I have at this moment so much opiate in my body that I hardly know what I am dictating."

A friend asked if he had made his peace with God. Heine answered, "Don’t bother yourself. God will forgive me—that’s what He’s there for."15 He wrote that he had two rooms: "the one I die in, and the grave." He died in 1856 of respiratory complications at age 59, 24 years after the onset of his illness.

His poetry lives on, and his popularity and importance are increasing. There were four new biographies of Heine in 1997, mostly exploring his political influence. Although his lasting fame is as a poet, he said he cared little about this, and wished to be buried with a sword and remembered as one who fought for liberty.

Heine’s disabling illness baffled historical diagnosticians for the next century and a half, and the arguments have not ended. Putnam16 and others felt he had multiple sclerosis, but others have suggested he might have had neurosyphilis, amyotrophic lateral sclerosis (ALS), sarcoidosis, encephalomyelitis, porphyria, spinal muscular atrophy, chronic polyneuropathy or spinal tuberculosis.17 Heine himself thought his illness was syphilitic due to his promiscuity in youth, as did his friends, and Macdonald Critchley15 felt this was as about as definite as it could be without serologic confirmation. The psychiatrist Nathan Roth reviewed the differential diagnosis, and provided details and psychoanalytical musings about Heine’s complex love life, but concluded he had porphyria. Stenager discussed the many differential diagnoses but leaned towards neurosyphilis, as did many authors in the 19th and early 20th century. Certainly, Heine’s expulsion from school for breaking the rule of chastity, and his frequent couplings with prostitutes in Paris and London added to the suspicion. Despite all of these arguments, the pattern of his recurrent symptoms over 24 years suggested to Putnam,16 Jellinek,14 and many other recent authors14 that multiple sclerosis should be strongly considered.

Did Heine have MS? The recurrent nature of the visual loss and the paraplegia, his impotence and incontinence, the recurrent brain stem symptoms, Lhermitte’s sign, Uhthoff’s sign, heat sensitivity, and the relentless progression due to a constellation of symptoms common in MS over 24 years makes it a plausible diagnosis. One would only hesitate because ptosis is rare in MS; it has, however, been mentioned in the reports of Charcot, Jellinex, Sparks, Zenker, Grauck, Edwards, and Hammond. Heine’s clarity of mind to the end is unusual, but, again, not out of the question in someone who had symptoms that primarily related to spinal, brain stem, and optic nerve involvement. His life and letters have been sifted repeatedly in support of one diagnosis or another, and it is unlikely that other helpful medical details will come to light. Given the evidence, I would conclude that, in modern parlance, the diagnosis is probable MS.

"Lighthouse" Stephenson

The Stephensons were a remarkable Scottish clan who were lighthouse keepers for many generations. They tended many of the great lighthouses of Scotland and the Hebrides. Allan Stephenson (1807-1865) was a third generation lighthouse keeper and an uncle of the author Robert Louis Stephenson. He was supervising 35 lighthouses in Scotland, many of them difficult to reach, and he complained of marked fatigue. "I am still grievously afflicted by drowsiness," he complained in 1844, when he was age 37. Soon after, he noted that his suffering was extreme, and he described his symptoms as rheumatism. He then recovered but a month later was complaining that he was again tired and ill. He described his symptoms in his letters as rheumatism, paraplegia, and lumbago. Bella Bathurst, biographer of the Lighthouse Stephensons, felt he was suffering from MS. He was getting worse, so he returned to Edinburgh to seek treatment from his brother-in-law, Dr. Adam Warden. He reduced his workload and began to frequent spas. His disease continued to worsen, and he was able to do less and less. He had to retire in 1853 and submitted letters from his doctors that indicated that he suffered from an unusually severe form of paraplegia. He continued to worsen, and felt his disease was due to his past sins. Allan Stephenson died 21 years after the onset of his relapsing and progressive illness.

Margaret Gatty, Victorian Writer

"Then you see I wage daily warfare with myself when I feel sad at my disablement from even the simplest action."
—Mrs. Margaret Gatty, 9 January 1870
Mrs. Margaret Gatty (1809-1873), a naturalist and author of very popular Victorian-era children’s books, probably had MS. Although she lived past the time of Charcot’s lectures and was herself published in the medical literature some years earlier, her life ended just as the first publications on MS as an identifiable entity were appearing in the English literature.

Mrs. Gatty was well known as a writer, founder of the very popular children’s publication Aunt Judy’s Magazine, and author of the five-volume Parables from Nature and the beautiful and authoritative guide British Sea-Weeds (1863).18 Her interest in natural sciences began in Hastings in 1848 when she took ill and her sympathetic doctor lent her books that excited her interest in seaweeds. The nature of that illness is not known, but she experienced her first neurologic symptoms that affected her general system. At that rather late time in her life (age 41), she began her writing career.

Because of continuing symptoms over the years, she consulted a physician in London in 1860 but was declared "sound organically," as she apparently had no outward manifestations of disease. She was clearly uncertain about this conclusion and wrote in her diary, "But still one must believe the Drs. know." In the next breath she wondered about the possible benefits of homeopathic therapies. Nine months later she wrote that her hand was "losing its cunning" and had a tremor. Her illness was at first intermittent, causing her to remain in bed for days due to attacks of "muscular or nervous rheumatism." She repeatedly visited the prominent Dr. Thomas King Chambers and was relieved to find the cause of her problem, as he was quite definite about his diagnosis. "He calls it ‘atrophic degeneration of the muscular fibers from overuse,’ so my troubles have at any rate got a fine name!"

She began to write with her left hand and complained of pain in the paralyzed arm and shoulder. The fourth volume of her Parables from Nature was written with her left hand. She was heartened that the doctors said that she would ultimately recover from her condition. Despite the reassurance, she continued to deteriorate and was referred to a London surgeon, Mr. Paget, who recommended a leather sling and a splint for her arm. She noted that her left arm was now developing symptoms and assumed, as many MS patients do, it was due to the overuse brought about by the weakness of the other hand.

She seemed unaware at the time that Dr. Chambers had described her condition in a presentation to medical colleagues and later published her case in Lancet as muscular atrophy due to excessive physical effort.19 He concluded that the weakness in her arms was due to overwork, which does not allow renewal of the nerve-forces needed by muscles. He explained that when this is exhausted, no new store of muscular substance can be laid in, the muscle degenerates into elastic fiber, and finally into pale fatty tissue of low vitality.

At this point, Mrs. Gatty developed a "tic" pain in her face that she thought was due to dental problems and wished to have her teeth removed. Dr. Chambers suggested, however, that she would be worse rather than better with their removal. She persisted and wanted to know if there was not someone who could remove them to relieve the tic pain using the new chloroform, which she had when she delivered two of her eight children. The tic pain in her face was probably trigeminal neuralgia, often thought to be dental when it appears in MS patients, but trigeminal neuralgia in a person under the age of 55 is almost always due to MS.

Dr. Chambers recommended rest for her muscle degeneration and suggested that she spend the winter at the renowned Bath mineral waters in southwestern England. At this point she was unable to write and was having trouble walking due to weakness and curling of the foot muscles in her right leg. However, she continued to be reassured by the doctors that she might recover. In fact, her left arm did show some recovery, and the surgeon, Mr. Hawthorn, still felt her condition was temporary and due to "time of life." She was spending much of her time on a couch, able to walk a little, but going outside of the house in a chair.

In 1868 she consulted "Dr. Radcliffe, a paralytic & nervous Dr. who told me there was no doubt whatever about my case: that it was spinal: a want of blood in the spinal cord. And he ridiculed the idea that it was ‘degeneration’ of the muscles!" In return, her doctors, Chambers and Paget, ridiculed Radcliffe, and still spoke hopefully to her of recovery.

Her speech became affected and she began falling. Cold weather was causing her leg muscles to tighten, Mr. Hawthorn said. She became very ill with an attack of "liver illness," her condition deteriorated further, her legs began to jerk, and her feet curled.

Her illness had a variable course that moved from one arm to the other, and then to her legs. She had a recurrence of the painful tic in her face and some speech difficulty. After many attacks, "which perfectly disabled me without making me ill," she became progressively worse and confessed she was willing to try anything, even quackery and mesmerism.

Mr. Hawthorn informed her that Dr. Chambers had mentioned her case in his lectures some six years earlier.20-21 She notes in a letter that "Dr. C. seems to consider it quite a peculiar case" but was buoyed by his confidence in her diagnosis. In August 1870 she wrote, "You must prepare to see me unable to hold up my head—I tie it up sometimes." Her legs were weaker, although her left arm was somewhat improved. A few months later she noted she was failing, despite the massage of her spine night and morning with a lotion suggested by another doctor.

By January, 1871, she noted regretfully that "there was nothing definite except the undeniable fact that I am getting lamer gradually." Her arms felt a little stronger but her hands were weaker. She saw a notice about the benefits of oxygenating the blood and wrote to Mr. Hawthorn, who prescribed a medicine he felt would have the same effect. Her leg and foot spasms were getting worse. She noticed that all movements were slower, such as combing her hair, patting the dog, and brushing her nails, but she also noted that there was a woman at St. Leonards who was worse afflicted, and could not even swallow. She could go out in a bath chair and noted, "I am a complete cripple & feel very weak, but not in bad spirits."

She was attended constantly by attendants who had to turn her repeatedly during the night—a situation that distressed her—but she added that although she was sad to have these services, she certainly would be in dire straits if she were a poor person. She continued to weaken, although "Enry" (Dr. Henry Hawthorn) kept insisting she was better and quite rightly felt she would improve after her deterioration during a bout of pneumonia.

After an additional year of complete disability, she developed a respiratory infection and died peacefully on October 4,1873. Because she had begun the idea of financially supporting a cot for sick children at the Great Ormond Street Hospital, and over the years her readers contributed to many cots in that and other hospitals, it was appropriate that there was an outpouring of support from her readers in all parts of the world to support more cots in her memory. This idea of endowing cots in hospitals was then taken up by many institutions, and these are a lasting memorial to a magnificent Victorian lady.


In every era, patients suffer with conditions that medicine has yet to fully understand or to treat effectively. Nonetheless, with the concepts and views of their day, they proceeded as best they could and were as confident as we are today dealing with conditions we understand incompletely. Just as we now understand illnesses like MS in our current paradigms and struggle to find ways to manage our patients better, they did their best in their age. MS has many mysteries and unanswered questions, and only time will show just how similar our struggles are to those of the early physicians in helping their patients with a disease they only barely understood.


I would like to thank my publisher and friend, Diana Schneider of Demos Publications, for allowing me to provide this brief outline of a chapter in my forthcoming book on the history of MS. Dr. Susan Drain introduced me to Margaret Gatty, Dr. Nick LaRocca to the Lighthouse Stevensons, Anna Aguayo to William Brown, and Heather Spears to Margaret Davies. Much of the research depended on the resources and the professional kindness and assistance of staff of the Wellcome Library, London, the Royal College of Physicians of London, and the British Library. Full acknowledgment of all who helped will be in the forthcoming book on the history of MS by Demos Publications.


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© 2001 International Journal of MS Care