Aggressive Multiple Sclerosis
MSi is painted over in pastel shades: people with the early disease often have little idea about what might happen to them. The general population has a skewed notion of the illness as those with aggressive disease fall off the social map and vanish. Here is a medically reviewed quotation from the MS Society of the UK:
"MS is not a terminal illness. However, it is a lifelong condition, so once you have it, you have it for life. Like everyone else, you are most likely to die from natural causes and can expect to have a relatively normal life span."
So, not much to worry about, then. Actually, there is an error in every sentence in the above quotation. Firstly, MS is frequently a terminal illness, though often indirectly; secondly, it is a multifactorial disease involving a chronic infection, and, if this infection is properly treated and the associated metabolic injury addressed, progression of the disease process can often be halted and sometimes reversed. The third sentence is disingenuous in that it ignores the quality of life. The reason for this disinformation is that no widely accepted treatment is anywhere near satisfactory: the disease usually starts off mildly, and, in its commonest form, years can go past with occasional minor relapses before a sinister change occurs and progression sets in with irreversable deterioration. Sometimes this phase can be very aggressive, and deterioration can be very rapid.
I first came across someone with aggressive MS while working as a house physician at Cossham Hospital in Kingswood, Bristol, England. It is beautifully situated and handsomely built, the gift of a colliery owner, Handel Cossham; it is called 'Cossham's' by the locals. It was completed in 1907, and has many features of Edwardian eccentricity. Here is a photograph of it. (link.) The dome of the clocktower is the highest point in Bristol, and at nights I used to borrow the key of the tower and go up to the gallery to look out over the city. The patient in question was a woman of 32; I remember her name to this day. She had had mild MS since her early twenties. The disease had suddenly became progressive, and within a year she was totally spastic, her tendons standing out like wires. She was unable to move out of the fetal position; she was blind, reliant on a gastrostomy for feeding; she had a urinary catheter and she was badly demented. Such was the difficulty with nursing that she had become a permanent resident in a dark corner of the women's medical ward. She was very skilfully nursed. Every aspect of her existence was terrible; damage to the white matter behind the frontal cortex had led to early character changes and her husband had fled. She never had any visitors. On his ward rounds the neurologist, my boss, would walk past her bed without comment. What could he say? I used to sit with her for some time, most days, wondering what process had caused this. Why this complex picture of relapsing-remitting disease turning progressive? Autoimmunityi? Why? How could that account for this condition? How long she survived I do not know; I moved to Oxford after my appointed three months.
When I came to be married, Sarah told me of her own history of a sudden weakness of her right hand which remained for a fortnight and then recovered; also a patch of numbness on her left thigh which again rapidly resolved. A very uncomfortable image passed through my mind. The years passed, though, with a happy, fulfilling life, restoring a large neglected house and spending holidays in France, walking in the beautiful countryside of the Auvergne. And then the sea-change came: after a prolonged respiratory illness, with asthmai, an almighty relapse which left her unable to walk. A partial recovery was followed by further weakness, thinking difficulties and paralysis of the right hand. She was somnolent and would sleep for hours during the day. The disease was progressing in a very active manner. I could see the alarm in the neurologist's eyes (and it takes a lot to make a neurologist look alarmed.) I knew that I was revisiting the past. Once progression is established it does not remit. Fortunately, Sarah's illness responded rapidly to antibiotic and supplement treatment. I now know that, paradoxically, it is often those with the most toxic form of illness who respond the best.
However, there is an aftermath, and this is really the point of this essay. The relief at finding a treatment - even a cure - for a phase of an illness considered absolutely incurable is boundless. Sarah has so much back, and, therefore, so have I. But when a life-event like this happens one goes into a state of emotional shock. You'd think that Sarah's recovery would be the end of the story, that I'd wipe my brow and get on with things. But it doesn't seem to work like that. There is an entire alteration of existential outlook. This takes a long time to come to terms with. And, too, there is the knowledge that an infective involvement is not yet accepted and thus very few people find effective treatment.