So near and yet so far...

CBC television news has scored a big "now now, CTV, getting a little too excited are we?" coup about the CCSVI hopes that all MS sufferers have been offered of late. While the "there, there" aspect of the report is definitely a cross station gotcha, the point is valid - too much excitement has been created too quickly over the thought that clearing veins will cure MS.
I have to admit I fell for it, too - one whole day of my life spent dreaming and hoping and wishing and wondering about what life would be like when I was all better, instead of gently deteriorating as I am now and have been for the past 20 years. What would it feel like to actually be well? What would I be like with no limitations? It was intoxicating.
Then my questions started raising their ugly heads...like how safe this procedure really was... and how come so many people needed to have multiple operations...and why would this have such dramatic results when most of these people necessarily had generated collateral circulation from their brains (or else they would have been a lot worse off or dead).
And why was there no difference in outcomes 18 months after intervention between people with progressive MS and control subjects? Surely there should have been some slight improvement, shouldn't there? Unless we are talking about a complex disorder here, perhaps more than one....
I am reminded of the discovery that breast cancer was really two different diseases depending on when it occurred in a woman's lifetime, that it responded differently to treatment depending on which disease it was. I'm also reminded of ulcers and the discovery than antibiotics cured them, most of the time.
Fact is, we often get things wrong first time around in medical and other research. Rather than immediately jumping on those cautious about the possibilities and accusing them of wanting to keep people ill (which I imagine must be very dispiriting for the researchers who want to replicate things and ensure they are right before jumping on the bandwagon), we should be thankful for the doubters.

I know how the MS people feel, being one myself. I know desperation for cure. I also used to be one of those people who wanted to always move forward, without looking behind to see what was falling off the truck as I sped along. I've worked for people like that, too.
But being off and unwell with MS for a year now, almost, has given me some perspective. Let the experts review things. Yes, push for research, broad, diverse research that may give us some clues. Push for free research, unbound by results orientation, as free research is often where the "ahas" are found, rather than in research that looks at how to make a pill 0.00002% more effective. Let the scientific brains do their random walk and discover miracles.
But wait until the proof is in before leaping to try untested remedies.
What worries me is that many people will beg for surgery, get it done, and die or suffer greater problems, and this will end the funding for further research into this promising area of CCSVI.
Be patient, people. We are all desperate. Breathe deep.

j'ai perdu le fil - or ccsvi and MS

Or is it: Ich habe den Plan verloren (I've lost the plot)?

Okay, reality is I was thinking of the threads of life with MS and then I went looking for a photo to use and there was this lovely one of Frances and her ball of string from Minnesota, and well, I just had to include it.

In any case, I haven't been posting because I've been like a kitten with Frances' ball (or perhaps a more manageable one) around this whole venous insufficiency cause of MS thing. One moment up, another down, one tangled up in hope, another tied up in cynicism.

On the one hand, it makes logical sense. As one commentator said, we've always known MS was an inflammatory disease, but we just didn't know what caused the inflammation. Makes sense that the iron deposits in MSers brains might stimulate some inflammation, eh what? And the refluxing thing seems reasonable in terms of laying down more iron than should be there. In any case, it all seems promising, just (alas) not right now.

On the webboards, there are hysterical requests for "where can we get this done now!" that sound very much like Veruca Salt in Willy Wonka. We don't even have ultrasound thechnologists who can do the assessment properly yet! And no one seems to be thinking about the risk of having a loose stent flowing right directly back into your heart...from the very pliable and easily torn venous tissue. But, like the gruelling stem cell research that several have gone through, if it appears to offer a solution, we want it NOW. I was just at an education evening about stem cell research where everyone was begging to have their immune system destroyed in the hope of some recovery. Two weeks alter, now everyone is begging for something completely different...

And there are the conspiracy theories about why we haven't heard of this before now - the "big pharma" companies and neurologists are in some evil conspiracy to keep us hooked on their drugs forever. Well, yeah, big pharma stands to lose some cash if we all get healed, but it's gonna take a while, and I imagine we'll still be taking the drugs for the foreseeable future, given that the iron won't be leaving our brains anytime soon, even if our veins work better. We'll still need dampening of our immune reaction to it.

Reality is, research in MS is charging forward at a great rate. I am quite amazed at the progress made in the last 10 years - heck, it's no wonder mine wasn't caught until just recently - it wasn't even well known when my symptoms arose. Even now, most docs know nothing about it. In the past few years, we've been given some real tools to delay things - a good thing while they work on the cure. The cure will take time. Unfortunately.

This leads me to resign myself to my probable fate. Perhaps this means I am not fighting enough for access to care, for treatment, for whatever. But I don't have faith in any of it yet. I dutifully take my Copaxone, while feeling it is doing no good, because it's the only alternative at present. I haven't noticed any reduction in flare-ups, really - in fact I am getting worse.

But fighting takes effort, and is wearying. I am too tired to fight with the medical system for unproven remedies. I'd rather exercise, try to keep well, rest, than take thousands of drugs for every symptom. And watch for chances where I can contribute to the research, to help, if I can, the 1000s behind me who are still young, who are still working, who have families still to raise. Yeah, I could push to the front of the line if I wanted to, maybe. But I remember being whisked past people holding their entrails in so I could get a CT scan quickly when I lost my vision. I felt foolish then. I'd feel foolish now. I can still walk; so many can't. My kids are grown; others' aren't. My parents are gone; others have parents to care for also. I can wait. And work on my own ball of string.