ALS is often referred to as Lou Gherig’s disease, leprosy as Hansen’s disease. I suggest we rename MS as Sgt. Schultz’s disease. My reason for such an preposterous proposition is that, if you ask anyone what they know to be absolutely true about MS, they’re apt to respond like the comical guard from “Hogan’s Heroes”*: “I know nothing!”
Go ahead, give it a try. Ask a doctor, a patient, or a researcher (if you know one) what fact they can say with 100% certainty about MS. People used to be pretty adamant that it’s an auto-immune disease. Not so fast. Now the MS Society is hedging those bets by saying, “Multiple sclerosis (MS) involves an immune-mediated process”, whatever that means.
The speaker at a recent talk I attended referred to the diagnosis of MS as a “diagnosis of exclusion.” In other words, they don’t so much diagnose what it is as what it isn’t. Once every other possible cause of a patient’s symptoms is eliminated – stroke, lead poisoning, lyme disease, etc., etc. – we can safely (?) call it MS.
Then you move on to treatment, which is similarly hit-or-miss. Try this shot. Too bad – you’ve developed neutralizing anti-bodies. That could be a problem. (But it might not be.) We’d better go to a non-interferon drug. Oops, another lesion on the MRI (even though you’re feeling fine). How about this pill? Still having attacks? That infusion should help. Maybe.
I’ve grown increasingly skeptical (which, in my case, is saying something) about our grasp on MS. That, of course, throws how we treat it into question for me. What follows is one source of my suspicions.
At every stage of history, medical science has thought it had all the answers. I just finished a fascinating book that brought this fact into focus. Bill Bryson’s “At Home” is nominally about the history of domestic living and how we came to live as we do. It’s far more, however. One section deals at length with how certain medical conditions have been treated over the years. The stories are sobering at least and often downright frightening. Here’s a sample:
- During one epidemic, some medical researchers thought cholera was caused by smells. One doctor claimed that, “all smell is disease.”
- With much greater wisdom, the New York state medical commission declared cholera to be isolated to the poor because it “arises entirely from their habits of life.”
- Before it was discovered that scurvy was the result of a vitamin C deficiency – and even after that fact was indisputable – some doctors clung to the theory that it was caused by constipation.
- There was a belief at a time in the 19th century that up to 40% of deaths in US was the result of exposure to unwholesome air during sleep.
- One story told of a doctor who treated a woman’s vision problem with a hysterectomy.
- How about the idea that tightly laced undergarments increased susceptibility to tuberculosis?
- For how long did doctors routinely treat a wide variety of illnesses by bleeding their patients or subjecting them to leeches?
Were these bad people? No, they were acting on their best hunches, fed heavily by personal and societal biases. MS has had its share of such nonsense. Until former Olympic skier Jimmie Heuga challenged his treatment, doctors told MS victims to rest and avoid all exertion. Today it’s fairly clear that the exact opposite is true. Exercise and movement are critical to slowing the effects of the disease. At least, I think it’s so.
Bryson sums up his discourse with the following statement: “Doctors were lost in the face of all but a narrow range of maladies. Often their treatment merely made matters worse. The luckiest people in many ways were those who suffered in private and recovered without medical intervention.”
What if that’s still true? What if what we “know” is wrong? What if the real way to treat MS has nothing to do with the direction we’re heading? What if all the debilitating side-effects of the current set of DMD’s (Disease Modifying Drugs – its acronym is disturbingly close to WMD – weapons of mass destruction) is doing us more harm than good?
Just asking, is all. What do I know?
*Hogan’s Heroes. A great premise for a sitcom. Is anything funnier than a Nazi prison camp?