I provided a fair amount of information about MS in a post I wrote earlier this year, so I won’t rehash it. But keep reading for more information about MS.
One of the takeaways from that post is the MS is unpredictable through its course as well as in its outcome. Some people with MS may exhibit minimal symptoms, perhaps because of the location and severity of lesions in the brain or other parts of the central nervous system. Others are severely impaired through much of their course of the disease. Others begin with mild symptoms, but progress to severe disability. There is no way to predict much of anything with MS. (Even whether you’ll “feel good enough” to attend that big social event you’ve been planning.)
“But you look so good!” A variant of this is “But you don’t look sick.” Those of us with milder forms of MS may have heard this more than once when people learn we have MS. This may be why I felt it would have been more trouble than it was worth to disclose that I had MS. For the most part, I required no accommodations on the job. (It’s not like I had a job that required manual labor in 95-degree heat. MS and heat don’t mix well. There is evidence that raising core body temperature leads to exacerbations or the flare-up of MS symptoms.
According to the National Multiple Sclerosis Society (NMSS), “approximately 400,000 Americans have MS, and every week about 200 people are diagnosed. World-wide, MS affects about 2.5 million people.” Most people are diagnosed between the ages of 20 and 50, which coincides with primary wage-earning period of their lives. The diagnosis for some coincides with the time when they are starting families and jobs. (I was diagnosed at age 36; but, as I look back, I had had symptoms some 6 years earlier.)
The diagnosis. Just as the disease is notoriously unpredictable in it’s course it is sometimes difficult to diagnose. Symptoms can sometimes mimic other diseases and lead physicians to consider other diseases, not MS. Some patients can go years without a definitive diagnosis. In my case, I received a diagnosis of “optic neuritis” back when I first exhibited signs of MS. But without other evidence (e.g., nystagmus or an MRI), I was left with the “optic neuritis” diagnosis. (Optic neuritis is often the first symptom of MS for many people. It’s a classic “entry symptom.”)
So what causes the symptoms? Because MS is an autoimmune disease, the symptoms are caused when the body’s immune system attacks the myelin coating of nerve fibers in the central nervous system. Myelin is destroyed and replaced by scars of hardened “sclerotic” tissue. These sclerotic patches are called “lesions.”
Myelin can be compared to the insulation on electrical wires. If the insulation is compromised, the transmission of electrical impulses is degraded. The same goes with myelin. When it is compromised, nerve conduction is impaired. Anything that is controlled by these nerves can be affected. For example, if there are lesions on the speech centers of the brain, a patient’s speech may exhibit symptoms. The NMSS has more information about myelin, if you’re interested.
Can it be fixed? A related question: “Can MS be cured?” My layperson’s answer would be that if the myelin can be repaired/replaced, yeah, MS can be cured. But that’s a big “if.” There is currently research into this. I think this is the holy grail. But right now there are disease modifying drugs [PDF] as well as drugs to treat the symptoms. But no, there is no cure.
Want more information? The National Multiple Sclerosis Society and Multiple Sclerosis Foundation are two places to start. The Wikipedia page on MS also has quite of bit of information, with 70-some references and some external links for further reading.
TOMORROW: I’ll look at MS from the patient’s point of view. I’ll highlight some blogs and web pages that provide a glimpse into what life with MS is like. I hope you’ll come back tomorrow to read it.