In a previous post about MS misinformation, I promised to write about how to get good information. This is an attempt to keep that promise.
Getting accurate and reliable information about MS is, for the most part, impossible. That’s because virtually nothing is known about the disease. The best information we have is based more on statistics than science. We don’t know what causes it, what drives it, or how to stop it. True, there are medicines that appear to slow it down, but no one knows for certain how they work and, the fact is, they don’t work at all for a huge percentage of people.
Read any description of the disease or the medications involved. The words: “know”, “facts”, “certainty”, and the like will not be used much. What you will read is a lot of: “it’s believed”, “we think”, and that kind of bet-hedging terminology.
Add to those problems the fact that no two cases of MS are alike. There is no standard disease progression. Your meds might not help me. (They might not even be helping you; there’s no way to know for sure.) One person’s alternative therapy might, in spite of its advocate’s passionate and strident claims, be a complete waste of time and money. Or worse, it could make you worse.
Then there are all those “facts” that later turn out to be dangerous myths. The best (i.e. worst) one was the lie that said you should stay inactive once you get MS. What are we being told today that ends up being a lie?
It’s all educated guesswork.
So where does one get the education to make the best guesses? In the spirit of the disease, there is no one clear answer. Here are the best channels I’ve found.
Your doctor – It’s good to have an MS-specialist neurologist. They are current on all the latest research. Keep in mind, however, that their guesses are based on not much more than what is readily available to you. And you have one advantage they don’t: You know your body.
Your body – This is the one thing you have over everyone. You know how you feel, even if you can’t describe it to anyone else. You’re likely to have an intuitive sense of what is working and what isn’t. That might seem unscientific, but remember, most of the MS “facts” aren’t very scientific either.
Your peers – The value of sharing information with others with MS cannot be overstated. They will be the only folks who truly understand what you are experiencing. As has been said, “You don’t get MS until you get MS.” There’s a lot of truth in that statement. Sit with a group of people with MS. As they share their struggles, watch all the heads nod in empathetic agreement. Find some people to talk to. I’m constantly amazed at how much I learn from the people in my support group. It’s like getting a graduate education in MS.
Seminars – For all their faults, the pharmaceutical companies are very generous with speakers, supper, and swag. This month alone, there are 46 (!) talks, webinars, or fairs where loads info on MS is dispensed, usually along with good food and cool tchotchkes. The best resource for finding these events is the calendar provided by the wonderful folks at the MS Cure Project. Just make sure to filter the hype from the reality. The best filter I know of is those peers again. They’re on the front lines, the “early adopters”. And they’re all around you at these events! Get to know them. Help one another.
Of course there’s no harm in reading books or the internet as long as you keep your BS radar on its highest sensitivity setting so you can separate the infinitesimal shreds of wheat from the bushels of chaff therein. Bad information can be more dangerous than no information at all.
Of course, none of the above could be true. Who really knows?