After hovering for quite some time, this is my first post. I was moved to post what follows by Deb's (Odd Duck's ) reflections. By the way Deb, I have read lots of your stuff and I think it's great.
Anyway, I think the apparent MS desperation is not by any means either solely the patient's or the media's fault, the 'medical establishment' has a great deal to do with it
I wrote this over the weekend and thought it was appropriate in this context.
When the patient is first diagnosed, the 'medical establishment' swings into action. They say “we don’t really know how MS works, we don’t know what causes it, we don’t know how bad your particular case is, we do know that twice as many women as men get the disease but that women do better with it (they tend to have a better prognosis), men by and large get worse much more quickly. We don’t know why this is. We think that MS is an autoimmune disease (the immune system, particularly the T-Cells [whatever those are] attack the myelin sheaths around the nerves, thus slowing travel of electrical impulses or even interrupting it altogether), but we don’t really know whether this is right. Something else might be going on. Most importantly, since we don’t quite know what MS is or what causes it, we don’t know how to cure it. Pretty much the only thing that we do know is that you will get worse, whether slowly or quickly is anyone’s guess. But we do have drugs that, although incredibly expensive (we sure hope that you have good insurance), give you a 30% or so chance of reduction of attacks. We don’t know why this is. If you have one of the more advanced forms of MS, there is nothing we can do, but we are working on it. There is no cure. But you really should begin a drug regimen with one of those drugs, called AvonexBetaseronCopaxoneRebif by us (the medical establishment) [and CRAB in the patient community]. Mind you, they have to be administered by injection so many times a week, but really, you can do that. It’s not difficult. We’ll train you. Yes they won’t cure you but they do give you a slight chance of reduction of disability. Maybe.”
After hearing all of this, the patient is understandably terrified and willing to do pretty much anything. Meanwhile, a glimmer of hope has appeared. There is a different drug that has a different method of action than the CRAB drugs do, that seems to have a better long-term prognosis, that has already received FDA approval in the US, and might receive approval in short order in Canada and Europe. Since you live in one of those place, you hope that it will. Because this drug is administered differently (by infusion, not injection). Because it seems to be more effective. So you are hopeful. But . . . disaster. The drug has been pulled. Two people who were in one of the clinical trials have becomes severely ill. One has died, the other one very well might. Meanwhile the trial of another drug, called Aimspro or goat serum, has been stopped over hospital irregularities.
The long and the short of all of this is that we need to acknowledge that in virtue of its very unpredictability MS is a terrifying disease. Given its variability, the most important thing is to find ways to accurately predict how severe it will be in any given case. Only then can a patient make an informed decision about the advisability of starting a drug regimen. The one (or one in four) asap serves all policy now in operation is not terribly helpful to the newly diagnosed who might, after all, have a benign case.