By Debbie Petrina
When my own MS began in 1980, there were only two organizations in the U.S. that supported multiple sclerosis – NMSS and MSAA. Although information and programs were quite scant at the time, development and availability began accelerating during the 1980’s.
There were no personal computers/internet, cell phones, or social media. My first MS peer connection in 1984 was arranged confidentially between myself and another member of the NMSS as a courtesy. Soon after, a team of MS patients began confidential, telephone-peer-counselor training sponsored by the NMSS. I was one of them.
Do you know these things about multiple sclerosis?
- Spinal taps were used as a diagnostic tool in 1980, but MRIs and EVR testing were not until a few years later.
- In 1980, there was little awareness of multiple sclerosis or the initials “MS.” “It’s that Jerry Lewis thing, isn’t it?” everyone asked. A gloom-and-doom picture of a person slumped in a wheelchair was imprinted. Nowadays, almost everyone in the U.S. has heard of MS or knows someone who has MS.
- Multiple sclerosis is Greek for “multiple scars”, referring to the many lesions resulting from multiple attacks on a person’s nervous system. Jean-Martin Charcot, a French neurologist defined and named multiple sclerosis in 1868.
- The word “multiple” is significant for diagnosing and describing MS – multiple occurrences of multiple symptoms in multiple parts of the nervous system.
- Decades ago, one test used to diagnose MS was a hot bath. Heat slows down the conduction of nerve impulses in all people, but is more so for people with MS. When a person who doesn’t have MS gets out of a hot Jacuzzi or sauna, they move slower. By comparison, a person with MS might not be able to walk or stand at all. (The good news is that heat doesn’t cause permanent damage; it temporarily worsens symptoms that will go away when the body cools.)
- Despite current, advanced technology and tests, diagnosing MS is still a process of eliminating other disorders and factors. A definite diagnosis will often not be made based on a single MRI or office visit.
- The ADA (Americans with Disabilities Act) didn’t exist until 1990. The ADA affirms equal opportunity and protection of the rights of those with disabilities regarding employment, government services, and other aspects of public life.
- Steroids were first used in 1951 to reduce/shorten MS inflammation and flareups. Prior to the mid-1990’s there were no DMTs (disease-modifying therapies). Initial DMTs were dubbed “abc” drugs, referring to Avonex, Betaseron, and Copaxone. Today, there are over 20 DMTs available to slow the progression of MS. Benefits of good health and wellness are recognized as being equally important treatments for MS.
- While research about MS has been ongoing for decades, the causes and risk factors of MS (so far) have been pieced together only in recent years. The combination includes neurological/immune dysfunction, genetics, environmental factors, and infections.
- What are the chances of getting MS? It depends on your neurological/immune system, genetics/ancestry, sex, race, where you grew up (country, latitude), Vitamin D/sunshine deficiency in childhood development, and other possible triggers.
- An estimated one million people in the U.S. (3.2 million globally) have MS. Like snowflakes, no two cases are alike. Each journey is unique and unpredictable.
- Symptoms occur from damage to the brain, spinal cord, and/or optic nerves. The range can be just several symptoms to many over a lifetime with MS. Symptoms may or may not be permanent, and often come and go.
- While most people associate MS as an impairment of walking, most people without MS are unaware of the overwhelming types of invisible symptoms that occur. Invisible symptoms can be just as disabling as the visible ones, e.g., fatigue, weakness, spasticity, depression, pain… There are too many to list.
In 40 years, much has been developed and learned about multiple sclerosis. While no one wants MS, the current time is better to be faced with managing it. With so much achieved just in the past decade, can you imagine what the next decade will bring? I remain optimistic.
Debbie Petrina is the author of Managing MS and a community advocate for MultipleSclerosis.net. During the past four decades, Debbie has lived with MS and spoken to thousands of people in the MS community — via social media, as a trained peer counselor, and as a participant in numerous MS-related events. She earned her bachelor’s degree in business administration from Duquesne University.