Friday, January 2, 2009

A little background...

Most folks who share their MS stories online often share some basics about their symptoms and treatment, so for those who are interested, here are the basics:

I was diagnosed last year, but I had been having a creeping onset of symptoms for at least two years before I realized that things were wrong enough, and not changing enough, to talk to my doctor about them. It took two tests: one a nasty EMG whose conclusion was that I had long-fiber nerve damage ("Well, we already knew that," my MD groused); the second an MRI, with the usual funny noises and mild gadolinium buzz. The neurologist who did the final diagnosis was, funnily enough, a former colleague of my university band director. I suppose the type of MS is "relapsing/remitting," but we won't know that until a few years have gone by and the pattern has been clearly established. Although as my wife said, "I'm still waiting for the 'remitting' part."

I refuse to have anything to do with the Western injectables. Something in my gut pushed back very hard when I thought about moving to them... not just "oh, no, that'll be a bummer, I don't want to do that, it'll hurt," but "No. That's wrong." I've never experienced anything like that before, and people that I really really trust told me to listen to that voice, and I haven't regretted it for a second. I'm very happy with my current treatment regimen.

I'm being treated by my MD (also an MS patient, who recently went off Copaxone and immediately reported that he felt better than he had for the three years he'd been on the drug) who does Worsely-school classical five-element acupuncture, a traditional Chinese herbalist, and not frequently enough (you start to run out of cash pretty quickly when the insurance doesn't help), a Qi Gong practitioner. All of them agree that MS isn't my problem, that's just the name us Westerners have given the symptoms; the real problem is upstream of the nervous system issues, and that's what they're treating. As I told a person interviewing me for an MS study, I go to the Qi Gong practitioner and tell him my legs are cold. He pokes me in a couple of places, waves his hands over me, and walks out of the room--and twenty seconds later, my legs warm up. Or I can shoot myself with Tysabri and maybe make my brain melt and die. Which do you think I'd rather do? (The interviewer's response: "You got that right.")

My problems are mostly sensory. The best phrase I've found so far is "data corruption." It's quite interesting how poor English is in describing insensitivity. There are a lot of ways to describe pain, but you're pretty much stuck with "numb" or "not numb," I haven't found a way to express "sort of numb" without making people rock their heads sideways, spaniel-style.

And of course, everyone with MS always has some issues that you definitely don't want to hear about. Fortunately, I usually laugh about them. (Most of the time, at least.)

Actually, now that I think about it--I pretty nearly always laugh about it. Laughter at the absurdity of your own predicament is definitely one of the gifts of MS.

1 comment:


Hi Robert, I have just discovered your blog through a comment you left on the blog of one of my MS friends. And, I've just all of the entries, some of which reached out and spoke to me.

Thought I would start with this one, however, to let you know that there is a medication for MS, currently still in trials, which is derived from a TCM treatment. Keep your eyes open for Fingolimod. I currently use Copaxone, but am very interested in Fingolimod when it becomes available.

For a while, I was seeing a Korean Master who supplied me with acupuncture and herbal medications. It got to be too expensive although I did gain some benefit. My body tends to lean towards damp wind with heat and congested Spleen. Interesting how our bodies react in different ways to imbalances.