Well, I signed on to my blog to do this post, and as it happens, today is the 3rd anniversary of the registration of this blog! It hardly seems possible.
In that time, there have been days when I spent as much as 12 of my 24 hours in the blogosphere, and there have been weeks, maybe even months, when I neglected it pretty completely. But one way or another, I have come to value my connections with the other bloggers I have “met.” These are people I would never have known otherwise. People of a variety of ages, nationalities, and interests. People with an astounding spectrum of points of view and reasons for blogging. Fascinating connections.
In addition to being my blogoversary, it’s also MS Awareness Week – which is what really brought me to the keyboard this afternoon. The National Multiple Sclerosis Society has a theme: Every Connection Counts. This is a perfect expression of how MS patients feel. It’s not just that the disease is isolating (which it can be), it’s also that the disease itself is manifested by a literal lack of connection.
Most people think of MS as a neurological disease – which it is. Or, at least it’s a disease of the central nervous system. But it’s more than that. Think of your nervous system as the electrical wiring in your house. If there’s an interruption in power, or a short in part of the system, a very frustrating loss of ability to do things ensues. Your house wires are all covered with plastic tubing to keep the connections intact and prevent shorts, but now picture a family of mice in your attic and bearing walls, chewing away at that plastic or loosening plugs, causing unexpected shorts and failures in different places around the house at different times with varying severity. That’s MS. Yikes.
For some reason, the immune system in MS patients perceives that insulation around the nerve fibers (the myelin sheath) as the enemy, and starts eating away at it. Then sclera (scarring or lesions) form around the areas of the damaged myelin. When they’re found in more than one place or at different times (and aren’t caused by anything else), you have Multiple Sclerosis. And here’s where my metaphor ends, because the wiring insulation in your house can’t grow back on its own, but myelin can. And the rates of deterioration and the rates of regrowth from person to person are as different as the people themselves.
MS is hard to diagnose, because the symptoms point to the nervous system (particularly the brain and spine) rather than to the elusive and more capricious auto-immune system – and the symptoms could be caused by many other things (tumors, strokes, inflammation, viruses…) that have to be ruled out. It’s made more difficult because of the variety of symptoms. There is no one test for MS. It’s a diagnosis by exclusion of all the other possibilities.
Even when there finally is a diagnosis, there’s really no solid prognosis available, because every case is different, and things can change. The “types” of MS are based on severity and whether or not there are periods of remission… which means you have to wait to see what happens to know what you’ve got. The patient may continue to work and appear fine to daily contacts for a very long time – but appearances can be deceiving.
So, every connection counts, and every bit of information or support is important. I say this with conviction, because MS has popped up in my family more than once. There seem to be tendencies for some families to have more auto-immune disease occurrences than others. That means MS, Diabetes, Lupus, and a variety of other syndromes and diseases that attack multiple areas or systems of the body show up more often. Yikes again. We don’t know why yet; we’re still connecting the dots.
The good news is that we’re learning more. Please don’t listen to the TV shows that portray young characters with MS seeing it as a death sentence. The disease is unpredictable and its course can change. Many MS patients have long periods of remission, and many lead very full, active, long lives. There are new treatments all the time that work on relieving the symptoms and slowing the course of MS (and similar diseases), and some that assist with the healing process as well. There are holistic and dietary treatments that can help. Each patient has to do a little work to find what works best.
So why blog about an unpredictable and currently incurable disease on a generally upbeat blog? Well, because it’s MS Awareness Week, silly. And because in your lifetime there is likely to be someone you meet who is one of the world’s 2,000,000 people living with the uncertainty and frustrating effects of MS. Because you can help with awareness, or maybe with fundraising for research. Because you can set the record straight when someone describes it incorrectly. Because you’re now one of my connections.
And every connection counts.
If you know someone who has, or may have, MS – here are A few helpful items: