December 3, 2009

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.


zoomdoggies said...

Well said. If the choice is between spending my time fighting the insurance companies and the medical establishment for something that may or may not work but will be inconvenient and probably painful and certainly expensive, or making the most of the life I have, I know what I'm going to choose.

Travelogue for the Universe said...

I am just catching up. This is a great post full of what many of us feel.I completely trust my doctor who is studying me and my DNA and taking shots.I believe they are helping from getting new "deep" exacerbations. I get mini flash flare ups of tingling, blurry vision etc.But He feels copaxone gives your immune system something to go after besides your myelin.avonex moderates the extreme immune swings. I am content with the proven for now. Wish you well.mary