Monday, July 20, 2009


So I'm finally connecting the dots between my puzzling new difficulties and the heat.

I've known for quite a while that people say MS doesn't like heat. I've finally figured out how that manifests itself in my case. It was one web author's description of "feeling like walking through mud" that finally made the connection. I was in downtown LA the other day, having a horrible time just making my legs move. Today, in the A/C at home, I don't have any of those problems. calls such things "pseudoexacerbations." Pseudo, I think, because they don't fit into the official "definition" (if you can call it that) of an exacerbation. But let me tell you, there's nothing pseudo about it. And its onset and "offset" are better defined than anything I've had that maybe was a "real" exacerbation.

Western medicine excels in areas that can be quantified. Sure, MS lesions can be identified and counted using an MRI, but its impact on your life is qualitative, not quantitative. It's no less real than something with a numerical titer, but because you can't meter it, the West can't even understand it, much less help you. The pharmaceuticals that are thrust at all of us don't even begin to address your quality of life; their manufacturers themselves are the first to tell you that. "Quality of life" is where I'm getting the biggest hit.

Western pharmaceuticals are driven by profits and probabilities; all the research relies on the "law of large numbers," they gauge results based on the average of the group, not the impact on the individual. MS doesn't work that way; every sufferer's experience is different. There is no middle of the curve because there's no curve. The West is, basically, completely lost; the questions they are so good at asking (variations on "What's the number") are the wrong questions. They can't help you. Giving things names like "exacerbation" makes them feel better, but that's all they got; they can't really tell you what an exacerbation is, or whether what just may or may not have happened to you was an "exacerbation." Of course, just ask any MS patient, and they'll tell you right away--but their answers will all be different.

Now if the DMDs help you, they help you. If steroids or other first-aid medications help you, they help you. As a friend of mine from Hong Kong once said, "If I have a hole in my side, I don't go to a Chinese doctor." But if these magic bullets can't help you, they won't. If there's one thing I've learned in my experience with the best of what Western and Eastern medicine have to offer, it's this: The thing that will help you, will help you, and that's all there is to it. Don't waste your time with the other stuff, because it won't help you.

Heavens, how did I get onto that rant? Oh yeah. "Pseudoexacerbation."

"Pseudo," my ass. Or should I say more accurately, "My legs."


Denver Refashionista said...

I think I have had two psuedoexacerbations this summer and at least one was heat induced. Stay cool.

Lisa Emrich said...

They may be called pseudoexacerbations, but they certainly feel every bit as intense as a regular exacerbation. Only difference is that once the trigger is removed the relapse resolves.

For some further information, see Multiple Sclerosis Relapse or Pseudoexacerbation?, Part One and Multiple Sclerosis Relapse or Pseudoexacerbation?, Part Two.

I again with Nadja - Stay Cool!!