The Dark Past of Multiple Sclerosis

 When did this whole thing start?

After years of trying to find out what was happening to me, I was diagnosed with Probable Multiple Sclerosis. Well, finally, my various symptoms had a name...probably had a name. Friends, co-workers, people I hardly knew, all told me they knew someone with MS - their aunt, a neighbor, a former co-worker. Everyone knew someone with MS, except me. Now I know someone -- Me.

Let me think. My grandparents had a serious car accident in the early 50's. After they recovered, for the next 15 years my grandmother Ola was slow and tired, often struggling to walk.  She was often in a hospital bed in the living room so she could enjoy her visitors.  She later moved into a nursing home. The doctor said there was no reason she couldn't walk; she had just given up. With what I know now, I have decided she probably had MS. Why didn't the doctor give her condition a name instead of telling everyone she just gave up? Maybe he didn't know either, and after his initial tests, he just gave up.

But so many people have MS, how could he not know? Even then it was a disease. So now I ask, when did it start?

In 1868, Dr. Jean Martin Charcot identified and described a condition he named multiple sclerosis. So maybe it started then. No, maybe earlier. Wth the benefit of hindsight, several people have been identified as possible MSers.

Charcot was the student of Jean Cruveilhier who published papers in 1838 chronicalling a patient who, on autopsy, was determined to have had "sclerose en plaques," now known as MS.

Sir Augustus Frederic D'Este, son of King George III, experienced his first identifiable MS symptom in 1828. He kept a diary detailing 22 years of double vision, numbness, difficulty walking, incontinence, and spasms.

In 1396, a young girl in Holland fell while ice skating. The skeleton of the skater, St. Lidwina, was autopsied in 1979 and her condition was ascribed to MS.

There should have been enough information to properly identify MS when it was found, but even years after Charcot's definition, people were frequently misdiagnosed.

Dr. Sigmund Freud's first patient, his nanny, had "creeping paralysis" which he dismissed as "female hysteria." That designation was often used when MS could have been the culprit.  In fact, the medical community considered MS to be a disease affecting mostly men; after all, women with similar symptoms were simply hysterical.

"...where I'm from, we believe all sorts of things that aren't true. We call it -- history."     Wicked (the musical)

There are so many conditions so close to MS, it is still difficult to distinguish and diagnose. It takes tracking changes over a period of time and eliminating everything else. It still takes an average of 6 - 8 years for a diagnosis that may or may not be definitive.

By 2007, the McDonald Criteria including the MRI have reduced the length of time and increased the accuracy of an MS diagnosis. Over a hundred years after MS was recognized as a real condition, we're getting closer to understanding, but there is still so much we do not know.

I think about my grandmother whose doctor thought she just gave up  She may have been screaming inside "No, you don't understand.  I really cannot walk!" I think of all of the women wrongfully labeled as "hysterical."  I am sure there are other disabling conditions with histories equally as puzzling.

Well, I have MS, and I am grateful that we MSers no longer have the burden of such misunderstanding.


** Below are some sites that give details on the history of MS:

Historical Survey of MS Research Progress PDF from NMSS
Historical Notes on Multiple Sclerosis - FireLady ·
History of Multiple Sclerosis - US NMSS ·
History of Multiple Sclerosis JF Smeltzer ·