Tuesday, May 12, 2009


A magazine-ette for MS sufferers, published by one of the big MS societies, came in the mail today. Something in one of the articles caught my eye, and unfortunately also raised my ire. I know that the people in these societies have nothing but generosity of spirit towards MS sufferers, and are committed to finding a cure. But what got my knickers in a twist was an article on "disease modifying" drugs. Points they raised were
  1. They don't cure the disease.
  2. They don't relieve disease symptoms.
  3. Quite the contrary: Their side effects are often worse than the disease.
They then went on to ask, "How can we convince people who aren't taking these drugs that they should take them?" And to state that the most important factor contributing to patient's decisions not to take the drugs was lack of contact with a neurologist, and that people who see neurologists more often are more likely to be on the drugs. Therefore, don't just go to your GP, see your neurologist, and he'll put your feet on the Right Path, because we want everybody to take these drugs.

Now, I refuse to speak for other patients, whose paths, resources, and needs are not mine. However, since my paths, resources, and needs are very much non-standard, let's review:
  • I see a neurologist every week. My acupuncturist/MD is a board-certified neurologist. He also has MS. He used to be on the only injectable he thought had no side effects (Copaxone). At some point he realized it in fact did have side effects, went off the drug, immediately felt better, and said he hadn't felt that good in the three years he had been on the drug.
  • The MS symptom that most negatively impacts my life is fatigue and energy drain--it's a "quality of life" problem. The MS drug manufacturers tell you up front that they won't improve quality of life. Quite the contrary: Inject yourself with interferon, you have a 100% chance of getting sick. One of my friends who's on interferon reports that he gets a shot once a week, feels like complete crap half the week, then feels good half the week. I already feel crappy at least 25% of the week, what's my motivation to feel more crappy?
  • My acupuncturist improves my quality of life. Significantly. My qi gong practitioners often give me symptom relief, as well as quality of life improvements. None of which the MS drugs will do--their manufacturers tell you that, right off the bat. As I told the person taking my information during an MS survey when she asked me whether anything could convince me to go on the injectables, "I go to the qi gong master and tell him my legs are cold. He waves his hand over my legs, pokes me in a couple of places, and walks out of the room: and my legs warm up. Or I can shoot myself with Tysabri, turn my brain to mush, and die. What exactly is my motivation to go on the injectables?" Her response: "You got that right."
The current MS treatments are a stick in the wind. They basically throw a shoe into the mechanism of your immune system, hoping to cause a failure somewhere near where they think MS is chewing away at your nerves' myelin sheathes, but not completely squash the entire immune system. The medical establishment pushes them, I think, because they're the only treatment they have.

But they're not the only treatment. Or the only way to approach this disease.

I'm developing a very interesting relationship with this disease. It has made many, many life choices for me. And aside from the annoying physical issues, I can tell that this is a road I need to travel. But shooting myself with things that won't help me and will make my life worse--not a chance. And thank you very much for caring about my health, but as far as this particular treatment path is concerned: stay out of my face.

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