- They don't cure the disease.
- They don't relieve disease symptoms.
- Quite the contrary: Their side effects are often worse than the disease.
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."
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.