Pain and MS, including those with an axe to grind

Oh legs. Legs'o'mine. Couldja leave me alone just for a leetle while?
I still don't get it - why is there so much numbness plus so much pain? Surely they should block one another out?
But no, here I cringe, legs repositioning every few minutes while I struggle to feel my fingers on the keys.
I do wish I understood this disease better. I wish anyone understood it better.
And thanks, CCSVI advocates for once again sending me an unnecessarily long and gruesome post to my CCSVI, the terrible temptations post. Every few months you send me one. It's tedious.It's advertising, pure and simple. Usually I delete the comments, made as they are by some mailing robot that spasms, like my legs, unexpectedly, and shoots out blather.
I've decided to allow this one because we are at the point of doing a study here in Canada that looks like it will be carefully designed enough to actually give us some answer, unlike all the observational studies done before. This study will assign patients with venous "obstructions" to control and experimental groups and do mock procedures on the controls. Everyone involved will be blinded as to who got what procedure. then, a year later, the groups will be switched, so everyone will end up with the procedure (important as it is an invasive experiment) and the same person can be evaluated throughout the experiment for effects. I don't know if they are following the procedures with physical therapy, my own personal thought about how the benefits are accrued from the procedure.
So in two years, we should have some hard research results.
Best thing is that the doc who is leading the study, while one of THOSE( neurologist) types, is also one of the most caring, considerate, and thoughtful neurologists I've happened to meet. I've worked with him on the Canadian MS registry project through CIHI and he is a good man, not given to self-aggrandizement, prone to listening to ideas, and open and easy to speak to. I'm hoping the centre in Montreal is going to be led by my other favourite neurologist, another gem of a doc. I'd mention their names but I don't want them to be swamped with people demanding care to the point they burn out. Nice neurologists are not common out there. tremendously smart and knowledgeable ones, yes, but pleasant and friendly, not so much.
Perhaps, unlike my numbness and pain, niceness and smartness don't normally occur together.

But in some lucky or unlucky instances, they do.

Why all the fury about CCSVI?

Whew. Apparently there will be an announcement about CCSVI made by the NL Health Minister at noon today.

Instantly the chatter lines light up. The CCSVI advocates are hollering again. They yell, they tirade, they do personal attacks on neurologists, the MS Society, the people who work at the MS Society, drug representatives, cardiologists, radiologists, that guy that's walking by the window, anyone who doesn't eat pasta, that annoying mosquito.

It's like as soon as you mention those four initials, you've poured alcohol on a fire.
From my way of thinking, I don't find such ranting persuasive. The pro-CCSVI people are sounding more and more like a cult of late.

We've seen this before, folks. Remember laetrile?

I don't know what will transpire regarding CCSVI and MS. I hate the medications we have to take that we aren't sure will do anything and that cost us a lot in terms of money and side effects (potential and present). I hate the fact that I have to take medications at all. I particularly hate that Copaxone has been fined for overcharging and they, TEVA, just wandered out of the discussion, grinning and patting their fat wallets. While gesturing with their other middle finger.

(But then, I have high cholesterol, too, and pay into Crestor's vast resources while eating potato chips. Thus supporting TWO evil industries. I feel kind of silly grousing about big pharma when I lack the self control to avoid them.)

But interventional radiologists are making money on this, too. They have better press at present, true, and maybe that's because a great many neurologists are, unfortunately, just not nice. Or they are frustrated dealing with a chronic disease for which they have no real hope or answer, despite years of research on it. Brains are, apparently, complicated. Immune systems even more so. Who designed this system, anyway?

In any case, the jury is still out. We're devoting resources to investigating this CCSVI thing, that, unfortunately, doesn't seem to be coming back with positive answers for many.

And any who raise a cautionary hand are being demonized.

This is a confusing disease. It's awful and hopeless and expensive and leads many to suicide. How about stepping back and stopping the attacks, eh, CCSVIers? I, for one, would be more tempted to listen. Right now I wish the whole thing would go away.