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!
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.