Thursday, May 13, 2010

Goin' the other way on the CCSVI limb

I was recently asking some people who know I have MS why certain people reacted as if I had a potentially explosive brain tumor when they heard I have MS. Without hesitation, the response was "they just don't know better."

OK, I can dig that, I guess... because it corresponds with my own lack of overwhelming concern about dying from MS, or disability. I've never really felt like MS would kill me, and I've long been ready to be a fulltime crip. I won't be overly stressed when it happens.

I've had signs and symptoms for at least 3-4 years now, with diagnosis Jan of 2009, but I kind of figured well, can anything be done? It can? Well, let's do it. That is not to say I haven't had bad times and that I won't have more... doesn't mean I enjoyed avonex shots and side effects (which went away), but I just don't have the feeling of MS as a "horrible, disabling, crippling, monstrous" yadayadayada life-sapping badguy. I know I must seem very lucky to some who have MS-- I have insurance, a fanTAStic neuroimmunologist, a working clinical trial, a job, and a genetic predisposition to get things done. I have done about 90% of things I've wanted to (honestly-- i'm just missing the Oscar), and all that is left is to live a good, decent life and create as little terror and pain as possible.

So yeah-- I just am not hopping on the CCSVI bandwagon. There are serious problems in the methodology of research (yeah, I'm a PhD in English, but I read pretty well too). My major surprise is that I didn't really think I'd see a shrill (both ways) medical fad/ cure/ treatment/ whatever it is or might be acted out as they were in the past. Hey, I'm a vegetarian, I like my herbs and adore my teas, but it's not those that turned the Xmas lites off in my brain. Whatever the reason, the clinical trial drug works VERY well in me-- may not in others.

I look at it this way-- I was so ridiculously low risk for MS (not Scandinavian, raised in the sun, not even ONE yeast infection, and a non-environmentally risky job-- but yeah, female), yet my lesion load was so tremendous that it took 8 docs 7 days or so to hesitantly determine what I did NOT have-- by god, SOMEONE would have noticed blood drainage/circulation issues!

Or not...

And that is how the discussion of CCSVI goes. There is always someone who was cured or will believe themselves to be cured via unorthodox ways-- I swear one person said he was cured by parsley, chorella, and vitamin D. HMM!! Shouldn't the vegetarian have been protected from MS if veggies were the key? Undoubtedly, I'd contracted some invisible yeast infection.... or it's stress... or blocked veins.

I really do hate monolithic arguments. I can understand fear and loathing of MS. I am sure I'm relatively "lucky". I'm even a bit credulous.

But not about MS. And if one more person declares "all docs"/neuros are "in bed with Big Pharma" I'm gonna smack them freakin' silly. With my still-functional right hand, then beat them with my occasionally-needed cane.

Grump. I await some science.

And anyone mention grammar errors are "not supposed to be in English-major blogs!", I will say I'm off duty-- and THEN beat 'em with my cane. Grr.


Colleen O'Shea said...

You'd think they would have noticed, but they didn't. They didn't know to look there, and didn't know they should be measuring the flow.

It's great you have conficence in your doctors. They shouldn't feel embarassed about an oversight like this, because it is hard to detect - even when the protocols are being followed. But what the studies are showing is lots of people with CCSVI also have reflux, that's when the de-oxygenated blood doesn't go to the heart but rather goes back to the brain. They don't know if that ends up causing the lesions yet, but it is an interesting hypothesis.

Doc said...

And hey, it didn't take long for Or Not to show. I hear the semi-condescending tone... because even though I did have Christmas lites in my head, perhaps I have lost large chunks of my rational brain. Perhaps "they" and "lots of people" will soon be better defined by the docs looking into it so it's not vague, or an "oversight". However, I'm not a true believer in anything- maybe because I was trained not to be. I really am fairly bright, MS notwithstanding.

I have no doubt my docs aren't concerned they missed much (unless you want to relive the 7 days of testing, scanning, bloody messes); the studies such as they are still beg for replication and rigor of "protocols being followed", and true believing doesn't make anything right, especially anything involving slicing into my body because a few score people "found relief".

Yes, you might guess I'm not a big one for second-guessing the experts who know my brain, though I am open to the ideas of others. But I always like them to be grounded in some pretty stringent science because this IS MY BRAIN. I actually need it for my job. Hey, I'm in a clinical trial, it's not like I'm not open, but the trial works-- subjectively, objectively, and very well.

Thanks for reading! No cane whacking shall ensue. Yes, I'm remarkably snarky when I want to be, but remarkably kind to animals, friends, and bunnies. I'm ssure some more Or Not will appear.

Dabble and the Mad Sow said...

Or in this case, a HUZZAH! I'm tired of the "wow, guess everyone missed the CURE, huh?" madness, tied as it is with rants against nasty neurologists, MS Societies, and that evil big Pharma.
I've worked in health care for 30 years or so and I know there are some skeletons in that woodpile, but I also know that shiny new "amazing" treatments are few and far between. I still can't figure out how, if the veins are blocked so much, the front of your face doesn't blow off, but that's just me. But of course, despite my years of nursing and epidemiological and health experience, I obviously know nothing. Just like my embattled neuro. Thank HEAVENS for those godlike cardiovascular surgeons, who never never look out for the money, who give so selflessly and reject pharma and tied to machine research money. They are gods, all of them.
Sorry. In a bit of a sarcastic rant. I'm sick of the whole durned thing, all of these people panicking who are much further back on the MS train than even I am, shouting that they need this treatment now, and the devil take the cost and shove it under the rug. Selfishness rules. I had all of my rellies die of cancer early on. I'm not going to push my case over theirs any time soon.

Doc said...

Yes, I too am not one to rush to blame everyone else for my woes, though yeah, hinky stuff happens in all fields. But it is real odd to see the mania, and I hope someone finds out something concrete soon-- especially now that clinics are popping up offering expensive slice-n-stent operations. I hope it doesn't get worse before it gets better!

raine said...

It's refreshing to see that there are some that can see the other side of this story (including one of your commenters, Dabble). More than that, I think there is a huge silent group in the social media world on this topic, who, although perhaps feeling hopeful for this new procedure, are cautious for good reason, and are still supportive of other good work and research in MS. I'm embarrassed to say I have MS because of those MSers who throw threats and blame at neurologists, MS volunteers and MS staff in Societies who have been generous in their care and compassion as I try to live with my disease. I do not want to be lumped in with those MSers. I've been watching the circus around this very closely and have observed that it is a handful of people who are stirring the frenzy (Wannabe Youtube Queen who wants us to boycott good work that serves people with MS and a certain Dr. "I Know Everything About MS" who has hated the Canadian MS Society for over a decade and has chosen this CCSVI bandwagon to claim his fame). One of the leaders of the MS Liberation group in Canada has exercised respect and open mindedness without anger or blame (Ms. Cooney as seen in the Globe and Mail), and for that I will support her. I don't disagree that some have symptom relief from this procedure, but how can you own that and then blame doctors and Societies for all the evils in the world?

Doc said...

You raised a good point.... MS seems to be one of those things that literally everyone who knows even a tiny bit about it will offer one some sure solution for. Hey, I'm big on herbs for stuff, but not saying I'm gonna cure my MS with em. I've been a vegetarian for a long time, and while one neuro thinks that "protected me" from more MS damage, who knows?

I'm not a big proselytizer, except for good education, so manias bring out the critic in me. And while we Americans are fond of our first amendment, hey, "Anonymous" of Oz? Anonymous comments are cowardly, and your comment had many logical fallacies (quite literally), so nope-- sign the comment or be off with ya. I have no interest in airing critically flawed fallacious comments. Happy to hear if someone is helped by something, but I may neither want to do it nor believe anecdotes.

Again, I wait for some good science, and wish people well with their endeavors. But hey-- no reason not to doubt.

And raine-- I hear you on embarrassment. But it's like family-- we wouldn't have chosen MS, nor, perhaps, some of our family, but here we are. I guess we have to live with the unfortunate note of real fear some live with, and wonder if moderation will arise sometime. if not-- ah well! :)