Thursday, December 30, 2010

A Video Interview with My CCSVI Doctor

MRI image of a patient with CCSVI. Diagnosis: ...

Image via Wikipedia

Sorry for the delay since my last post, but I've been a bit under the weather. Nothing serious, but as my fellow MSers know, just a touch of fever can really set MS symptoms afire. It's that whole heat sensitivity thing…

I'll be working on a new post in the next several days, but rather than leave everyone hanging, I thought I'd post this interview with the Interventional Radiologist who did my attempted CCSVI treatment, Dr. Salvatore Sclafani.

A quick recap for those who've discovered Wheelchair Kamikaze since my try at liberation: I underwent a catheter venogram procedure last March, which revealed that I do have a blockage in my right internal jugular vein, but, as with everything else about my disease, it's pretty strange. Unlike most other patients found to have the venous blockages associated with CCSVI, whose abnormalities occur inside of their veins, in the form of stenosis, valve malformation, or anomalous membranes, my blockage is caused by a muscle bundle outside of the vein pressing in on it, forcing it significantly closed. This blockage can't be addressed in the usual ways, with balloon venoplasty or with a stent, so further options are being explored.

I currently have tentative plans to undergo a second procedure with Dr. Sclafani sometime early in the New Year, to recheck my entire CNS venous system, as well as take another look at the blockage in my right internal jugular. Dr. Sclafani has learned much since I underwent my procedure nine months ago, as knowledge of CCSVI and how to treat it is evolving exponentially, almost by the day. This is why I've recommended in previous posts that those with milder symptom profiles and less aggressive disease should probably hold tight and wait 6 to 12 months before pursuing CCSVI treatment, since the procedures being done now are much more sophisticated than those done just a few months ago, and those done several months from now will be all the more refined. We'll also be discovering much more about the prevalence and impact of CCSVI in the coming months, as several trials start reporting initial results.

Unfortunately, my disease continues to progress rapidly, and I believe left unimpeded it will have me bedridden within the next 12 months, so I simply don't have the time to wait. Any port in a storm, as they say…

And so, without further ado, here's Dr. Sclafani, with a comprehensive assessment of the current state of CCSVI research and treatment, including an explanation of what CCSVI is, the methods used to treat it, the uncertainties surrounding the hypothesis, reasons for optimism, and the need for healthy skepticism and realistic expectations. BTW, I did not shoot this video…

Enhanced by Zemanta

Sunday, December 19, 2010

Ho Ho Ho-Now Give Me Your Money

A&P, COFFEE, SANTA CLAUSImage by George Eastman House via Flickr

No, I don't want your stinkin' money, but if you are looking for places to do some charitable giving this holiday season (and before January 1, so you can write it off on this year's taxes), I thought I'd provide a list of some of the more esoteric MS related nonprofits that could certainly use whatever funds you might be able to spare. I know that times are tight, and many of us can barely afford to keep ourselves afloat, so please know that I'm not trying to guilt trip anybody. But If you do suddenly find yourself sprouting a full set of white whiskers, an expanding girth, a red velvet jumpsuit, and an unquenchable urge to give, here are a few places worthy of your dough re mi…

· CCSVI Alliance (click here)-this is a new organization devoted to helping further research and learning about CCSVI and its treatment. Although only a few months old, the CCSVI Alliance is already starting to see its presence felt, and is sponsoring events such as a CCSVI Walk-n-Roll in Tampa Florida (click here), and a learning symposium at Brandeis University in Waltham, Massachusetts (click here). Future plans include sponsoring panels to encourage dialogue between neurologists, interventional radiologists, and patients, and the funding of CCSVI treatment research. (Full disclosure-I am a member of the CCSVI Alliance's Patient Review Board, but please don't punish them for their dubious choice of friends).

· Buffalo Neuroimaging Analysis Center (click here)-often referred to as BNAC, the center is currently conducting numerous CCSVI trials, including ongoing imaging studies and one of the few CCSVI treatment studies currently underway. BNAC is home to a dedicated group of CCSVI researchers, led by Dr. Robert Zivadinov, a world-class research neurologist. BNAC has until January 1 to reach a fundraising goal of $150,000, which will be matched dollar for dollar by a grant from the Direct-MS Foundation. BNAC offers some innovative fundraising options, including the hosting of MStery parties (click here), which have been held around the country. I had the pleasure of personally attending one of these parties here in New York City, and virtually attending one held at The Pink Door restaurant in Seattle, Washington, during which I had the honor of introducing Dr. Zivadinov, live via Skype. Oh, the wonders of modern technology…

· The Myelin Repair Foundation (click here)- The MRF is the world’s largest non-profit research organization exclusively focused on developing the next generation of MS treatments—myelin repair. By aggressively dismantling the walls that exist between researchers and labs that often compete rather than collaborate, the MRF is in effect building an entirely new research model, which is a necessity of the utmost urgency, as our current research model is horribly flawed (click here for Newsweek article on this topic). The founder of the MRF, Scott Johnson, is himself an MSer, and his tireless efforts, and that of his organization, have already led to some innovative scientific breakthroughs that hold the promise of fulfilling the Holy Grail of MS research, the repair of nervous system damage done by the MS disease process. In just five years, the efforts of the MRF have led to 19 new potential myelin repair drug targets, 24 new research tools for neurological disease research, 18 patentable inventions, more than 50 articles published in peer-reviewed journals.

· The Accelerated Cure Project (click here)-The Accelerated Cure Project for Multiple Sclerosisis a national nonprofit organization dedicated to curing MS by determining its causes. The organization's main effort is the creation of a large-scale, multidisciplinary MS Repository of blood samples and data from people with MS and matched controls. The ACP makes these samples available to researchers investigating the causes of MS and other demyelinating diseases. In exchange for access to the repository, researchers agree to return the data they generate from the samples so that results from disparate experiments can be combined. So, the ACP not only wants your money, they quite literally want your blood, too. The Accelerated Cure Project holds in its repository over 40 tubes of the Wheelchair Kamikaze's blood, which, as I've noted in previous posts, are for some reason kept in a specially designed lead lined box, guarded by a detachment of highly trained Sasquatches.

· The Multiple Sclerosis Research Center of New York (click here)-The MSRCNY is headed up by my personal neurologist, Dr. Saud Sadiq (who I affectionately call Dr. Big Brain, because he's really smart). In addition to his clinical practice, Dr. Sadiq runs the MSRCNY, an independent, private not-for-profit research entity dedicated exclusively to research into the cause, treatment and remedy of MS. Areas which the Research Center is investigating include identifying the cause of MS, understanding the mechanism and progression of the disease, new treatment strategies for MS, and, most excitingly, neural cell repair and regeneration. This last area of research includes explorations into the use of adult stem cells to repair the damage done by MS. Just as an aside, I've heard that the MSRCNY has some marmosets, but they have so far refused to allow me to play with them. I suspect that if I keep arguing with Dr. Sadiq about CCSVI, though, he may try to turn me into a marmoset. If he promises to turn me into a marmoset that can walk, I may just go for the deal. I'm not sure how Karen would feel about being married to a marmoset, but she's pretty easy going…

So, there you have it, five lesser-known MS nonprofits that are very worthy of your charitable donations. To all of my readers, I wish you from the bottom of my heart a very Merry Christmas, a belated happy Hanukkah, a good Kwanzaa, and a joyful (and belated) Eid-al-Adha.

And to ring in the holiday, here's one of my favorite rock 'n roll Christmas songs, done by The Waitresses, a band the 18-year-old me saw perform at the now long gone Peppermint Lounge on W. 45th St. in Manhattan, on New Year's Eve, 1981, at about 5:30 AM.

Good times, those…

Enhanced by Zemanta

Sunday, December 12, 2010

Bits and Pieces: The Return

Adults with chicks

Image via Wikipedia

It's been a while since I've done a "Bits and Pieces" post, so I think it's high time for another one. Just to review, this series of posts are a collection of various news items and other bright and/or shiny objects that have caught my attention in the recent past. Most have something to do with MS, but I reserve the right to include whatever random objects show up on my radar screen.

Please note, I do not actually have a radar screen, although, now that I think about it, I would definitely like to have one. I'm not sure what I would actually do with my very own radar screen, but it seems like having one would be good for at least a few minutes of amusement every day. Kind of like a fish tank, which I also don't have, or a 50-year-old plaster statue of Louis Armstrong, which I do.

When I was single, back in the 90s, I had my very own pinball machine in my very own bachelor pad, and on many days my pinball machine was good for several hours of amusement. It was an old machine from the early 1970s, and it featured a picture of a woman who looked a lot like Angela Davis (click here). I also had my very own 3 1/2 foot tall inflatable Emperor Penguin named Emerson. It was quite the swinging bachelor pad, and was like a Venus Fly Trap for female aficionados of pinball and Emperor Penguins. In other words, I wound up playing a lot of pinball. By myself.

Anyway, on to Bits and Pieces:

  • This article from the Wall Street Journal (click here) talks about the roots of the soon to be available oral MS drug Gilenya. I'd been hearing for years that the drug was derived from an ancient Chinese herbal remedy, a fungus called Cordyceps that grows on the back of caterpillars. But, according to this article, while Gilenya does have its roots in ancient Chinese herbal medicine, it's actually derived from a fungus that grows on cicada bugs, eventually killing them and then using the bug carcass as nourishment while the fungus grows. In the flowery prose of the Wall Street Journal (now, there's a phrase that's not used very often), it's described this way: “By summertime, the insect is dead and its corpse has been transformed into a vessel for the blooming fungus." Poetic, isn't it? Turns out that this fungus has strong immunosuppressive properties and a refined version of it was first tried as an antirejection drug for transplant patients. When that didn't work, they turned the drug's crosshairs on MS patients, and found the compound to be quite effective at suppressing relapses and reducing enhancing lesions. It may even have neuroprotective properties, and is currently undergoing trials on PPMS patients, one of the few drugs ever trialed on that particularly hard to treat patient population. I have serious reservations about this drug, which I'll discuss in an upcoming post, but it is interesting that an ancient Chinese herbal remedy has indeed been found to have powerful medicinal properties. The Chinese have been using many of these remedies for over 5000 years, and common sense should tell us that they wouldn't still be in use if there wasn't something to them.
  • Here is a brilliant piece of scientific investigation entitled "Fatigue, Sleepiness, and Physical Activity in Patients with Multiple Sclerosis" (click here). This study somehow separates fatigue from sleepiness, measuring them independently, and then comes the startling conclusion that the amount of physical activity undertaken by an MS patient decreases as the severity of the disease increases. Gadzooks! Stop the presses! Meticulous scientific study has shown that the more crippled somebody gets, the less physically active they are. Guess I'd better cancel my plans to summit Mount Everest. And I was so looking forward to my scheduled meet and greet with the Yeti (click here). This brief abstract doesn't quite tell us the precise difference between fatigue and sleepiness, although apparently they can be measured on different scales. Personally, I don't think I've ever been fatigued without being sleepy, or sleepy without being fatigued. Maybe I'm just too tired to understand the difference between the two, or too sleepy, or too fatigued. Either way, trying to figure this out has made me exhausted, and I think I need a nap…
  • Speaking of naps, I discovered a cool little app for the iPhone or iPod Touch called Pzizz Energizer, courtesy Julie Stachowiak's weekly MS column on (click here). Pzizz is kind of a guided meditation thingie that mixes sound effects, gentle music, and a soothing voice to lull you into a highly relaxing nap of anywhere between 10 and 90 minutes (the length of the nap is user selectable). I'm usually pretty suspicious of such things, but I really respect Julie's writing and perspective on MS, and was confident she wouldn't recommend anything that was complete bullshit. So, I ponied up the dough and bought the app for my iPod Touch, and promptly gave it a whirl. Sure enough, the hypnotic sounds generated by the app put me into a very relaxed state, and when my 25 minutes were up, I did find myself a bit more energized. In all honesty, the effect wasn't much different from some guided meditation CDs that I have, but Pzizz promises that the program will be different every time you use it, so you won't pass out simply from the sheer boredom of listening to the same program over and over again. I can't tell whether it works better on sleepiness or fatigue. Perhaps I'll apply for a research grant to study this mystery, but that will have to wait until I get back from Mount Everest.
  • The total scumbags who conducted this study (click here) concluded that MS patients exhibit twice as much withheld anger than the general population. Fucktards! What the hell do they know, with their fancy PhD's and symposiums and crap. These pieces of animated horse shit further conclude that the suppressed anger in MS patients is "caused by nervous system damage, rather than an emotional reaction to the stress of the disease." As if. Did it ever occur to these mental Lilliputians that the suppressed anger of MS patients may have something to do with the fact that money is being spent on asinine studies like this one, rather than on finding a cure for this fucking disease? If these scientists were standing in front of me, I'd kick them squarely in the nuts. I'm assuming the researchers were men, because no woman would be stupid enough to conduct such a mind numbing bucket of moose piss. But wait! Rats! I can't actually kick anything, because I have goddamned MS. Those bastards! Holy crap, now I have even more repressed anger! Aaargh!
  • Okay, so much for repressed anger. Sorry about that, don't know what came over me. Must've been my nervous system damage causing repressed anger. Well, maybe not that repressed. Anyway, my friend Michelle, who was Montel's Facebook Friend of the Week a few weeks ago (click here) sent me this link (click here) which made me laugh harder than I've laughed in a long time. It helps if you're a dog lover, but even if you're not, this is just plain funny. For those of you with urinary urgency issues, you might want to read this in or near a bathroom, because I almost wet myself about halfway through the read.

Okay, that's it for this edition of Bits and Pieces. I think this post has run the full gamut of emotions, and now I've got to go check on getting my very own radar screen. EBay, here I come…

Enhanced by Zemanta

Sunday, December 5, 2010

The Frustration Machine

Rubik's Cube

Image via Wikipedia

I recently posted a piece titled "Surfing an Emotional Tsunami", in which I talked about the overwhelming torrent of emotion that comes bundled in the Multiple Sclerosis package (click here) . One astute reader commented that I had left out a very important feeling with which he often saw his MS stricken wife struggle: frustration. And, of course, he was absolutely right. The more I thought about it, the more it became clear to me that frustration plays such a large role in the experience of MS patients that it deserved a post of its own. MSers experience frustration on so many different levels that it's presence can almost be taken for granted, like the air that we breathe. Unlike life-giving oxygen, though, frustration can be suffocating, and in fact can be the seed of many of the other negative emotions that plague MS patients: fear, anger, guilt, desperation. Frustration strikes on many fronts, and MS patients battle it in its myriad forms over and over each and every day.

The disease itself frustrates all that it touches; patients, their loved ones, and the doctors who tend to them. The infrastructure that has grown up around the disease, a multibillion-dollar a year engine for which MS is the fuel, generates its own set of gargantuan aggravations. And the world itself, in which an increasingly disabled person can start to feel more and more alien, holds perhaps the most implacable frustrations of them all.

Let's start within the patient, and work our way outward. Upon diagnosis, patients are told that we have an incurable disease (frustration of the terrifying variety) that, despite over 150 years of research, medical science barely understands (mind-numbing frustration). Our immune systems for reasons unknown have gone on the fritz, we are informed, and have become cannibalistic, slowly devouring our own central nervous systems (petrifying frustration). The more questions we ask, the less clear the picture becomes, and as questions beget questions, the mind begs for answers that simply aren't there (intellectual frustration). We are trapped in a medical Rubik’s cube, and despite decades of endless turning and twisting, the goddamned colors refuse to line up.

As the disease progresses, its attendant frustrations, often suffered in silence, progress right along with it. The nagging disturbance of a numb or weakened limb slowly morphs into the outright horror of a once faithful leg or arm that has become totally dysfunctional, more a hindrance to be overcome than the helper that it used to be. The frustration I feel when I am forced to use my still functional left arm to physically place my now useless right arm into some out of the way position is indescribable. Despite my never-ending attempts at ferociously willing the damned thing to move, that arm becomes ever more and more unresponsive, as if it were part of a corpse grafted onto my body.

As physical dysfunction spreads, no amount of willfulness is able to impede its momentum. The frustration involved in watching oneself whither away is simply beyond words. When medical science first recognized MS as an identifiable disease, one of the earliest names given to the condition was "Creeping Paralysis", a discomforting label to be sure, but one that much more accurately describes its horrors than any of the medical jargon now used to conveniently camouflage the realities of Multiple Sclerosis. Million dollar words like spasticity and paresis do nothing but dress up in ludicrously antiseptic scientific jargon the fact that I can't move my fucking arm or leg. I'm not a case study in a scientific paper, I'm a human being with creeping paralysis. Frustration…

Each of the physical losses inflicted by the disease frustrates the execution of everyday tasks that in the past never even warranted a second thought. I very often find that my losses reveal themselves in the countless simple acts that it takes just trying to get dressed and out the door. Can the word "frustration" even begin to describe the emotion I feel when I discover that some of last year's difficult tasks have now become damn near impossible? When last December's barely winnable struggle to put on my right sock has now become an unworkable nightmare? When such inconsequential modern conveniences like the zipper on my favorite leather jacket have suddenly been transformed into infernal devices seemingly designed specifically to illustrate just how brutal a toll this disease has taken on my body? Certainly, there must be a mightier word, but for now frustration will have to suffice.

For those who love and care for us, watching the disease’s effects from the outside in is its own particular brand of torture. Though I don't have any children, I can only imagine the helpless anguish a parent must feel watching their child struggle with the disease, no matter the age of the parent or the child. The only personal experience I have that might begin to compare would be the gut wrenching desperation I felt as my beloved Labrador Retriever Stella (click here) succumbed to cancer. Though I know such a comparison might make a mockery of the parent-child bond, it's the closest I can come, and at least I could take some comfort in the fact that my canine friend had lived a relatively normal life span. But there can be no such comfort for a parent watching their adult child, the essence of their own flesh and blood, gradually become diminished. Can a young son or daughter's immature mind even process the sadness, anger, and frustration of having a dad who can no longer play catch, or a mom who needs to be mothered? And those spouses who decide to stick by our sides, dauntless spirits all, navigating the treacherous path laid out by MS, not out of necessity but by sheer love and devotion, how to define their courage? I've been given no other choice but to follow this road, but for my wife Karen exit ramps abound. And yet, by the grace of all that is good, she remains. Somehow, she remains.

Conversely, the frustrations felt by those who love us can in turn incite yet different shades of that same emotion deep within we who suffer from the disease. Despite mutual attempts to shield each other from the hurt, it's plain to see that our physical and emotional pain is causing those we love distress, and like the chain reaction that generates an atomic blast, frustration from all sides collides and mutates, simultaneously leaving too much said and too much unsaid, for the region between "dwelling" and "denial" is narrow and almost impossible to navigate. Every day small talk can become unbearably trivial, yet speaking of nothing but disease is poison for the soul. Phone calls from the concerned can come too often, or not often enough, and social invitations become objects of synchronized dread and delight. Yes, I would love to meet you at the cafĂ© for coffee, but there is this thing about the zipper on my coat, and I don't know if next Tuesday will be one of those days that I'm simply too tired to get out of bed, and if it rains my wheelchair becomes as useful as an anchor. Frustration…

Many times simply being a member of the human race in a world that naturally caters to the well can conspire to frustrate at every turn. I flip on the television and see commercials hawking products that not long ago might have filled me with consumerist desire, but now are almost comically useless to me. What am I going to do with a shiny new Jaguar? Watching a sporting event and marveling at the incredible physical talents of the athletes involved, I sometimes can't help but reflect on the fact that the man making that impossible catch is doing it with far more ease than my increasingly futile attempts to simply put one foot in front of the other. Lovers delightfully snuggling on a park bench, that business suited jackass blindly walking through a crowd oblivious to everything but his blackberry, the single eight inch step that keeps me out of countless shops and restaurants, the everyday problems with office politics and petty relationships that so consume the healthy but, through the lens of far greater troubles, have now been revealed to be nothing more than trivial distractions. Frustration. Never-ending, unrelenting, heartrending frustration…

On an entirely different plane are the frustrations large and small of becoming trapped in indentured servitude within the universe of modern medicine, as a chronically ill patient must be. It didn't take all that long for me to go from being blissfully ignorant about some faraway malady called Multiple Sclerosis to the shocking realization that the gleaming miracle machine commonly presented as 21st-century medicine is simply a tremendous ruse. Despite all of its high-tech wizardry and and the considerable brainpower of its highly trained physicians and healthcare practitioners, modern medicine is first and foremost a fantastic engine for generating astronomical wealth for a gaggle of corporations, often at the expense of the very patients it purports to benefit. In many ways it's a money machine that feeds on sick people. Multiple Sclerosis, because it has revealed only enough of it secrets to make its treatment a highly profitable endeavor, is almost the perfect disease to unmask the sleek veneer of modern medicine and reveal the unsightly leviathan within.

For those "lucky" enough to have one of the more treatable forms of the disease, the medicinal remedies offered make all too real the expression "pick your poison". None of these medicines do anything at all to address the still unknown underlying cause of Multiple Sclerosis. Instead, by modulating or suppressing the intricate and poorly understood human immune system, they temper the paralyzing attacks suffered by those with Relapsing Remitting Multiple Sclerosis, without doing a damn thing to cure them.

These drugs do increase the quality of life of many of those taking them, as fewer relapses certainly make for a more pleasant existence, but at best the evidence shows that they may slow down the eventual progression of the disease, but they certainly don't stop it. As an added kicker, all of these medicines carry with them troublesome side effects. The least effective "Disease Modifying Drugs" commonly make those taking them suffer from "flu-like" symptoms, which, roughly translated, means they make people feel like shit. Better to feel like shit then suffer from paralyzing MS relapses, but certainly no panacea. Furthermore, these drugs only help about one third of the people taking them. How's that for frustrating?

The newer, more effective (and more costly) drugs profoundly impact the workings of the human immune system, and carry with them the possibility of some terrifying side effects, including brain infections and cancers. None are ever trialed for more than two or three years, so their long-term effects remain unknown, but patients are expected to rely on them for a lifetime. What affect will disabling half of my immune system have in five or 10 years? Well, we don't know, but just sign on the dotted line and let's hope for the best. Frustration…

Those like me, with the progressive forms of the disease, who don't suffer "attacks" but instead experience a slow and steady decline, are left with the choice of doing nothing, practically assuring a gloomy outcome, or partaking of the above-mentioned remedies, with little hope of experiencing the benefits realized by the folks who suffer relapses. Since I personally find the idea of doing nothing anathema, I've subjected myself to the full gamut of therapies and concoctions offered up by modern medicine, despite the knowledge that chances are they would likely do me no good. Indeed, this has been the case. I've received no benefits from these shots in the dark, and rather than simply do me no good, some of them have actually worsened my condition. Frustration, self doubting, 20/20 hindsight frustration…

And now we have the hope of CCSVI, the so-called vascular theory of MS. After decades of largely fruitless research focusing on the immune system, there comes the stunning revelation that abnormalities in the veins that drain the central nervous system may play an integral part in the MS disease process, and perhaps might even be the long-sought cause. Even if not the cause, anecdotal evidence suggests that at the very least, the clearing of these abnormalities through the use of a relatively simple, minimally invasive surgical procedure may relieve some of the symptoms borne by those with the disease.

Instead of the eager cooperation one might expect to find between the various medical disciplines required to fully test the theory, we get an eruption of the equivalent of a medical food fight, with researchers, physicians, and politicians brawling over how and even whether to test the hypothesis. Patients, at last energized by an intoxicating dose of hope, are caught in the middle, looking on incredulously as academic and bureaucratic arguments delay the relatively simple trials that would be needed to prove or disprove the theory. If there were pharmaceutical fortunes to be made from CCSVI, you can bet your ass that sophisticated trials would have commenced long ago. But no, corporate profit potential is lacking, and so it has been left largely to the patients themselves to foment what could be a medical revolution. Frustration. Angry, seething frustration…

How to deal with the many hued variations of frustration met by those dealing with Multiple Sclerosis? If only there were an easy answer, a meditation or incantation that would simply make it all fade away. But no, we must be steadfast through the storm, letting neither the past nor the future cloud our experience of the present. All of the emotions engendered by Multiple Sclerosis, frustration included, give every one of us dealing with the disease the perfect right to curl up into a ball and bemoan our fates in a deserved orgy of self-pity. And perhaps it's best that on rare occasions we allow ourselves to do just that, to let loose with a guttural wail of anguish. But for the vast majority of the time, we must steel ourselves to take control of our emotions, to experience each day moment by moment, making the numberless conscious decisions that allow us to not only survive but to thrive in the face of undeniable and treacherous adversity. We must not deny ourselves the right to contentment, for contentment and even happiness must be created by every individual from within, attained by a total immersion in the moment, and finding that small kernel of good always contained in the now. We cannot deny our feelings, but we can work with them to discover our own very personal sense of ease, frustrations be damned.

Sunday, November 28, 2010

My Friend Is Now Montel's Friend, and How to Help the CCSVI Cause…

Montel Williams at the premiere of War, Inc. a...

Image via Wikipedia

Quite the disjointed title, I know, but I promise, I will weave it all together into a tapestry of MS beneficence (how's that for a mouthful?)…

As I'm sure most of you know, Montel Williams suffers from MS. He's been very public about many of the treatments he's tried, from chiropractic (click here) to something called "The Wisconsin Project", which uses an electronic thingamajig that patients hold in their mouths to stimulate the nerves in the tongue and thus rewire the brain (?) (click here), and he's also been very vocal about his support for medical marijuana, claiming that it's just about the only thing that regularly helps him with his excruciating MS pain (click here).

As long-time readers of this site know, I'm down with the medical marijuana thing, though I haven't puffed in quite a while. My neuro prescribed Zanaflex for my muscle spasms, and although I generally like to stay away from pharmaceuticals (says he who has an entire pharmacy in his medicine cabinet), the stuff works, and I never really enjoyed getting stoned on MJ, even as a kid (although I did go through the requisite "say yes to drugs" phase in my misspent youth).

Naturally, in this the age of Facebook, Montel maintains a Facebook page (click here), on which he names a "Friend of the Week". This past week, his Facebook friend was Michelle Firestone Brown, who just so happens to be a buddy of mine. I'm not really sure what kind of accolades and benefits being named Montel's Friend of the Week bestows upon a person, but I'd imagine that Michelle would be perfectly within her rights to wear a sash reading "Friend of Montel" and a diamond tiara, if she so chose. Knowing Michelle, I'm not expecting a sash or a tiara, and that's why I like her.

ADDENDUM (11/28/10 9:15 PM): Guess I was wrong about Michelle not wearing a sash or tiara to celebrate her being named Montel's Facebook Friend of the Week. Well, at least about the tiara, as is evidenced by the photo below, which arrived tonight via e-mail…


I have a confession to make. I am a Facebook Luddite. I just don't understand the appeal. Since it now seems that you lose your membership card to the human race if you don't have a Facebook page, I do have a personal page, but I almost never look at it. I get e-mails from people requesting that I be their friends, and usually press the "confirm" button, but that's about the extent of my Facebook participation. Aside from rediscovering old friends, there just doesn't seem to be that much "there" there .

I have this vague feeling that I'm missing out on something, as so many people seem to be slavishly dedicated to Facebook, but whenever I check out one of my Facebook friends' pages, I usually find updates like "I just had scrambled eggs. They were runny.", or "Terrible case of the bloat this morning. Alka-Seltzer rules!" While I was writing this post, I looked at Montel's page, and his latest update was, "Up early getting ready for my morning appearance on QVC-tune in and watch me!" I hate to be a killjoy, but really, if I were making an appearance on QVC I would probably be doing it under an assumed name.

I know there are dozens of Facebook CCSVI pages, and people keep telling me that I need to put up a Wheelchair Kamikaze Facebook page, but I don't really understand why. If any of you would care to enlighten me, please do so in the comments section of this post. Growing up, I was led to believe that the technology of the future would simplify our lives. It seems to me it's only made things more complicated. Where is my jet pack? Where is my replicator? Where is my robot butler? For that matter, where is the cure to my freaking disease? Or to any freaking disease?

Anyway, I've veered way off course. This is supposed to be about Michelle and helping the CCSVI cause, so let's get back on track…

I became friends with Michelle through this site, after we exchanged several e-mails in the early days of the CCSVI revolution. She works here in New York City, so we met for lunch one day, hit it off, and have been good friends ever since. She's also a wheelchair person, and we've talked about collaborating on a Wheelchair Kamikaze video in which we'd sneak up behind unsuspecting pedestrians waiting at crosswalks for the light to change, and blast them with air horns. Given the below the waist view of my wheelchair mounted camera, we might get some shots of tourists in Times Square involuntarily filling their trousers. Would certainly make for quite the amusing video, although we might upset a few folks. But what the heck, what are they going to do, beat up a couple of gimps in wheelchairs? Just let them try, my wheelchair weighs over 300 pounds, and judging by the huge chunks I've taken out of the walls in my apartment, I'm sure I could demolish any attacker's shin bones. Anyway, I'm not sure we'll ever really go through with it, but I do find the concept extremely amusing. Kind of like a wheelchair version of "Jackass".

So, back to Michelle and CCSVI. Not only is Michelle a friend of Montel, and a friend of Marc, but she's also the Vice President of the CCSVI Alliance (click here), a nonprofit organization whose mission statement reads, "CCSVI Alliance is dedicated to educating patients with research-based information, providing tools for patients to advocate for themselves, and supporting medical professionals' exploration of Chronic Cerebrospinal Venous Insufficiency (CCSVI)."

I know most of the people involved with the Alliance, and I'm even a member of their Patient Advisory Board (but don't hold that against them, everyone's allowed one lapse in judgment). Although the organization is brand new, and is just getting going, they've already facilitated the production of several very informative video interviews of CCSVI luminaries, including one that will soon be posted featuring two CCSVI pioneers, Dr. Michael Dake and Dr. Manish Mehta, discussing the future of CCSVI treatment trials, which we all realize are of vital importance. This video is chock full of very important insights and observations, and I will definitely link to it here when it's ready for public consumption.

But wait, there's more! In the near future, the CCSVI Alliance plans on funding CCSVI research, holding conferences and forums bringing together doctors of different disciplines to help speed up the research and education process, and bring our hopes for CCSVI to fruition. Time is of the essence, as every day finds more people getting diagnosed with MS, and those who already have it getting mired deeper and deeper in the relentless progression of the disease.

I am an ardent supporter of the CCSVI Alliance, and believe the organization will be a major force in furthering CCSVI research, ultimately benefiting the entire MS population. As with any nonprofit, the efforts of the Alliance rely entirely on the charitable contributions of its supporters. So, if you believe in the promise of CCSVI, and are in a giving mood, donate whatever you can afford to the CCSVI Alliance, even if it's only a buck or two. It's easy, and you can even use PayPal to do it (click here). Every donation will be greatly appreciated, and will go to a cause that has the potential to change the entire MS landscape.

See that, I did manage to tie together all of the disparate elements in the title of this post. Yowza.

I'm still not understanding Facebook, though…


Enhanced by Zemanta

Friday, November 19, 2010

CCSVI: Some Words of Caution

The vertebral vein.

Image via Wikipedia

The subject of CCSVI (the vascular theory of MS) has proven to be incendiary, and has set the MS community ablaze. Initial studies into the hypothesis indicated substantial benefits could be gained by opening up the blocked veins in the neck and thorax of MS patients. These studies were soon backed up by an ever building wave of anecdotal patient reports of sometimes nearly miraculous improvements gained almost immediately after undergoing venoplasty, now known in the CCSVI universe as the Liberation Procedure.

In the wake of these reports, a tremendous amount of controversy has arisen, pitting MS societies and mainstream neurology against patients suddenly energized by hope, clamoring for access to a procedure they believe has a good chance to save them from the unrelenting ravages of the MS beast. Canada, which has one of the highest per capita MS rates in the world, has declined to even allow treatment studies of the liberation procedure to begin. Its single-payer health system refuses to recognize venoplasty as a potential treatment for MS, leaving Canadian MS patients with no options for treatment in their home country. The same situation holds true in most European countries. In the United States, the state of affairs is somewhat better, as an increasing number of physicians are offering the treatment to patients, although many health insurance companies won't cover it, and the cost of treatment is quite high. Additionally, waiting lists can extend for six months or more.

As a predictable result of this pent-up demand for treatment, a flourishing "medical tourism" industry has emerged around CCSVI, with clinics in Poland, Bulgaria, Costa Rica, Mexico, China, and India (and I'm sure I've forgotten a few) offering the procedure for a price, typically between $10,000-$20,000. It's been estimated that somewhere in the neighborhood of 2500 patients have visited these clinics, none of which have tracked the condition of their patients to any acceptable degree once the patients have departed for their home countries. Some of these patients have reported in at various sites on the Internet, but these patients probably represent less than 10% of the total patient population treated. Therefore, we have no good data on the effectiveness or safety of the treatments performed abroad.

The Liberation Procedure can take two forms: balloon angioplasty, in which tiny balloons are inserted into the veins and then expanded, thereby forcing open the veins, or stenting, a process involving the insertion of tiny mesh metal tubes into the veins, which when expanded prop the veins open. Often the two methods are used in conjunction, with patients receiving the balloon procedure in some veins, and stents in others. Both procedures carry the risk of clotting, although that risk is much amplified when stents are used. Because of this hazard, those who have undergone the Liberation Procedure are typically required to stay on a regimen of blood thinning anticoagulation medications for several weeks or months afterwards, necessitating the need for careful monitoring by qualified physicians to ensure the proper levels of medication are maintained. This aftercare can sometimes be hard to procure, as many physicians are reticent to treat patients for procedures that have been performed by foreign doctors and that they little understand. This problem has been especially prevalent in Canada, where the single payer health system has thus far refused to provide aftercare to patients that have gone overseas for "liberation".

In recent weeks, several troublesome (and in one case tragic) reports have begun to surface. Some patients returning from treatment in foreign clinics have experienced thrombosis (clotting) in their newly implanted stents, an extremely worrying condition that requires medical supervision (click here for article). In one truly horrifying episode, a young man who traveled to Costa Rica for treatment returned home to Canada, experienced thrombosis, and was turned away by local physicians when he sought their medical expertise. Ultimately, the patient returned to Costa Rica for treatment, and subsequently perished (click here for article). All of the patients in question had stents implanted in their jugular veins, which dramatically increases the chances of thrombosis when compared to balloon angioplasty, although that procedure too opens patients to potential problems with blood clots.

While the above incidents were transpiring, a conference on CCSVI was held at the annual ECTRIMS (European Committee for Treatment and Research in Multiple Sclerosis) in Gothenburg, Sweden. Many CCSVI research studies were presented, which are discussed in detail in the recently released article on (click here for article-you may be required to register at the site for access, a process which only takes a few minutes and is well worth the effort. Medscape is terrific resource for medical information). This article is quite long and offers an in-depth look at some very important research. It should be required reading for all patients interested in CCSVI.

The data presented at ECTRIMS was often in conflict, with some studies contradicting others, but the general consensus seems to be that while there is an identifiable correlation between CCSVI and MS, there is question as to whether CCSVI is the cause of MS. Rather, it may be a condition that is a result of the same disease process that causes the CNS damage seen in Multiple Sclerosis, or very possibly could contribute to the severity of the disease. It's quite possible that all of these scenarios may hold true, as MS differs so much from patient to patient that a variety of factors may result in its causation. In some patients CCSVI may play a major role in their MS, but in others it may play no role at all.

Given the above developments and wealth of new information, I feel compelled to offer the following words of caution. I know this message will not sit well with the most fervent CCSVI advocates, but I feel I would be remiss in not offering them.

While I am still a strong believer that CCSVI will prove to play a major role in unraveling the MS puzzle, I think that it is vital that patients use extreme discretion when choosing whether or not to undergo the Liberation Procedure, particularly if they must fly to far off destinations to procure treatment. According to one of the most experienced physicians performing the liberation procedure, Dr. Gary Siskin in Albany, New York, only about one third of patients treated receive dramatic improvements in their condition. Another third experienced minor benefit, and yet another third received no benefit at all. Furthermore, the rate of restenosis (veins closing back up) after balloon angioplasty is quite high, somewhere in the neighborhood of 50% within 12 months of treatment. These statistics alone should give patients some pause, as 66% of treated patients do not get the level of benefit they hoped for, and of those that do, 50% revert back to their previous condition, necessitating the need for additional procedures. This translates into 17% of patients who get liberated with the balloon method finding the lasting relief they sought.

The use of stents should be seriously questioned. In addition to the news reports above, Internet forums are revealing yet more patients suffering from stent thrombosis, and through this blog I've received numerous e-mails from other patients struggling with this problem. Stent thrombosis is only one of the potential hazards associated with the devices. The long-term failure rates of stents placed in the jugular veins is completely unknown. Most of the stents now being used were originally designed for use in thoracic arteries, where they are not subject to the nearly constant bending, twisting, and torque that they undergo when implanted in the extremely flexible human neck.

Data collected from two other patient populations that commonly receive venous stents (patients suffering from some cancers, and end-stage renal disease patients undergoing dialysis) is not especially encouraging. The failure rate of stents placed in dialysis patients has been found to be close to 50% after one year (click here for study). Although direct comparisons between disparate patient populations cannot be made, this data does provide reason for concern. Thus far, CCSVI patients treated with stents have not reported any instances of stent failure. However, the longest any of these patients have had stents implanted is only about 18 months, and the vast majority of patients fitted with stents have only received them in the last several months. I fervently hope that we do not start seeing a rash of stent failures in the months and years to come. The possibility can't be discounted, though, and only time will tell.

In conclusion, although CCSVI does hold tremendous hope for the future management of multiple sclerosis, we are presently in only the early infancy of investigation into the hypothesis and its relevance to the MS disease process, and of the practice of treating the condition with venoplasy. Beyond a doubt, future Liberation Procedures will bear little resemblance to those being done today, as new devices specifically designed for the task come on market, and the techniques and practices used to implement them are refined.

My heartfelt advice is that all those except the most desperate (and by that I mean patients with extremely aggressive disease who are quickly hurtling towards total disability) simply wait for 6 to 12 months before embarking on a quest for liberation. This will at least give some time for research to begin to catch up to patient expectations, and for physicians to better understand the best methods used to address the venous anomalies being found in MS patients.

I echo the warnings of virtually all of the most prominent physicians in the field, Dr. Zamboni included, that no patient resort to medical tourism in their quest for liberation. The risks of doing so are very real, particularly when the use of stents is involved. Balloon angioplasty is a much safer option, but the high incidence of restenosis means that many patients spending tens of thousands of dollars on treatment in foreign lands will find whatever gains they experienced lost, and will suffer not only from a return of their symptoms, but from broken hearts and broken bank accounts.

I fully understand the almost irresistible pull to get the disease taken care of NOW. I am close to being one of the desperate, if I'm not already there. This is why I chose to undergo a procedure this past March, which revealed a significant venous blockage but was unable to get it opened (mine is a very atypical case; the blockage is caused by a muscle outside of the vein pinching it almost closed). Hope is a powerful intoxicant, one that has been long absent for the vast majority of MSers. But we cannot and must not allow hope to eclipse reason. We all would like to see CCSVI advance as quickly as possible, but unfortunate events such as those recently reported will only provide fodder for those who would see the hypothesis relegated to the dustbin. Stay strong, friends, and act with extreme diligence.

Enhanced by Zemanta

Sunday, November 14, 2010

Surfing an Emotional Tsunami

Rembrandt's The Storm on the Sea of Galilee, s...

Image via Wikipedia

Dealing with a chronic illness like MS is a multifaceted affair. There's the physical side of things, each patient having to tackle their own particular hodgepodge of the wide range of symptoms in the Multiple Sclerosis repertoire. Cognitive dysfunction, fatigue, sensory issues, muscle weakness, spasticity, neuropathic pain… the list is almost endless, or at the very least can certainly feel that way. Many of MS's physical manifestations have some sort of medical remedy, with varying degrees of effectiveness, most often in the form of a pharmaceutical product. There's Baclofen for spasticity, Neurontin for pain, Ampyra for muscle weakness, Provigil for fatigue… again, the list seems endless. For the pharmaceutical companies, at least, MS is the gift that keeps on giving. For those afflicted with it, though, MS is the gift that keeps on taking. Most of the MS patients I know have a veritable pharmacy in their medicine cabinets. The amount of pills I take each day is almost comical. Almost.

The frequently veiled side of MS is the psychic beating it inflicts on its victims. Being hit with a chronic illness provokes a roiling ball of confusing and sometimes conflicting emotions within a person, so much so that these emotions can often be as overwhelming as the outwardly apparent physical symptoms of the disease. The emotions stirred are many layered, some obvious, and others less so. There are pharmaceutical remedies for some of these ills, too, of course, in the form of antidepressants, anti-anxiety meds, and the like. Speaking from experience, some of the drugs prescribed by those in the psychiatric profession are quite good at relieving freeform angst and anxiety, but I don't think they're all that effective at putting a dent in the emotional maelstrom stirred up by a disease that forces many of its victims to cope with the prospect of literally watching themselves whither away.

Strangely enough, my getting MS seems to have cured many of the neuroses that I struggled with in my physically healthy days. Back then, I was quite the world-class neurotic, at times capable of making Woody Allen seem well-adjusted. I never really suffered from depression, per se, but from anxieties that could sometimes be overwhelming, on occasion leaving me almost totally incapacitated. Some of these anxieties were triggered by genuine emotional traumas, such as the breakup of a relationship, or some other major life disappointment. Others, though, were harder to fathom, such as the acute anxiety I felt whenever a plate of pasta was put in front of me in a public place. No joke, a big helping of linguine with white clam sauce served to me in a restaurant was enough to make me hyperventilate and fall off my chair. Many years of psychotherapy and the use of a very effective medication helped me carry on despite myself, but I never could quite rid myself of my finely hewn neurotic behaviors. I made efforts to get hold of my emotions and rein them in, but more often than not, my emotions stood triumphant.

Once I was diagnosed with MS, though, most of my vast array of angst ridden tendencies were somehow exorcised. It was as if the Universe said, "You want something to worry about, schmuck? Instead of fretting about fettuccine, here, chew on this…" Suddenly, I had something very real to agonize about, and from this new and dreadful perspective the founts of my old fears appeared to be quite insignificant. Not that I wasn't initially completely freaked out by my diagnosis; I most certainly was, but having an identifiable trigger for this onslaught of emotions made them easier to gain control of, and made most of my previous concerns seem quite trivial in comparison.

I eventually discovered that the key to gaining some emotional command, even when the very foundations of my existence seemed to have been pulled out from under me, was sorting through the jumble of feelings engendered by my diagnosis and dealing with each one individually. When the mind twisting stew of painful emotions remained intertwined, their burden seemed insurmountable, but when I made an effort to untangled them, and to identify and address them individually, I found that I could create some measure of peace within.

Some of what I was feeling was easy to name. Fear took the forefront, but there was also anger, confusion, self-pity, and regret. I was fearful of what the disease might do to me, and of the head spinning medical world I was now being forced to enter. I was angry at just about everything, the doctors who diagnosed me, the disease itself, all the incredibly lucky bastards walking around in hale and hearty health, completely oblivious to their good fortune, and basically at the whole fucking suddenly upside down universe. I was confused about what exactly Multiple Sclerosis was, the strange new jargon attached the disease that would soon become a big part of my daily lexicon, and how sickness could invade the illusory fortress of my everyday existence. I pitied myself for being singled out for disaster, and for the future I had imagined but now seemed forever lost. And I regretted many of the choices I made when healthy; not so much the things I did do, but those that I didn't, and would likely never have the chance to do again.

Some of these feelings were easier to relieve than others. I confronted fear and confusion by almost obsessively educating myself about everything MS. I devoured every word I could find about the disease, rooting out esoteric tidbits of information from whatever sources I could uncover. As with all things in life, fear of the unknown is far greater than fear of the known, and I was determined to know, intent on staring even the most unpleasant facts about the disease squarely in the eye. Anger slowly subsided as I realized the futility of being angry at everything and nothing, as there was no identifiable culprit to focus my fury upon. The truth is, sometimes the anger still bubbles up, but I've learned to allow myself to feel it without letting it consume me. Self-pity got old quickly, as even though I might be a victim, that didn't give me license to wallow, with time now suddenly such a precious commodity. Instead, attack became my operational mode. Regret, I think, has been one of my hardest emotions to wrangle, as in many a quiet time I find myself drawn into contemplating all of the roads not taken. Would they all have eventually lead to MS, or would some of the paths that I'd left untrodden have circumvented this fate? Impossible to know, of course, and the variables seem endless, a latticework of converging and diverging fortunes.

Recently, I've come to recognize yet another emotion birthed by the disease, one that I have at times openly expressed, but never put a name to: guilt. Throughout this whole experience, underneath the louder and more histrionic emotions, guilt has resonated in a low but steady hum. Completely illogical, I know, as I didn't choose to get MS, but there it is, nonetheless. MS has an insidious and wicked gravity. At the disease's epicenter is the patient themselves, but its destructive influences radiate outwards, touching all who orbit the afflicted. MS doesn't only distress the person unfortunate enough to suffer from it, but all those around them as well, friends and family who are left helpless to watch their loved one struggle with a relentless enemy.

My wife and I were married only one year at the time of my diagnosis; gone were our happily dreamed of journeys to Pompeii or Tuscany, replaced instead by trips to medical facilities and doctor's offices. In addition the husband-and-wife, we've now become patient and caregiver, and although we said "I do" to the words "in sickness and in health", we never had an inkling of the impact with which sickness would soon slam us. My illness has caused endless worry to my family members, and especially to my mom, who has her own struggles with diabetes and Parkinson's to contend with. My friendships have also borne the strain of the illness. I have learned that family is in many ways defined more by love than by blood, and I'm blessed to have a handful of friends who long-ago eclipsed the boundaries of that title. They too have been stricken by my MS, and though we all do a marvelous job of playing make believe when we get together, it's impossible to ignore the realities of my situation.

I've always considered guilt to be one of the most worthless of emotions. Its only purpose is to teach those feeling it to never again commit the act that brought on the reaction. Unfortunately, many of those who most deserve to be shackled to an anchor of perpetual guilt seem oblivious to the emotion, and continue to repeat their offensive behaviors again and again. Liars lie and cheaters cheat, and though some may loudly profess the guilt they feel, their actions always prove otherwise. Once a person accepts repugnant behaviors in themselves, guilt is completely taken out of the equation. People sensitive to guilt generally live admirable lives, not so much because of the specter of guilt, but due rather to fully functional moral compasses.

Yes, MS provides challenges aplenty, both physical and emotional. The physical challenges tend to attract the most outside attention, and can be addressed, with varying degrees of success, by a multitude of physicians. The emotional pitfalls of the disease, though, can only be navigated by the patients themselves. Even a trained counselor or therapist can only help nudge the patient along the trail to self-awareness.

I've discovered that kindness to self is a powerful medicine. Strangely, many find it much easier to be kind to others, even strangers, than it is to be gentle to themselves. The emotional tsunami created by a disease like Multiple Sclerosis provides plenty of instruments for self torture, and though the feelings produced should not be ignored, they must not be embraced, either. The key is to acknowledge each emotion as a natural response to a terrible circumstance, allow yourself to feel it fully, and then show it the door. Our emotions are products of our own psyches, after all, and with practice and fortitude we can learn to control our creations. It's never easy, and as the disease progresses the degree of difficulty increases still, but as with any exercise, the more it is worked on, the easier it becomes. As Shakespeare wrote, "to thine own self be true", some of the best advice ever penned. If I might be allowed take such liberties, to the Bard's words I'd like to add, "to thine own self be good"…

Enhanced by Zemanta

Thursday, November 4, 2010

Bits and Pieces: From Sublime to Ridiculous

Cropped screenshot of Charlie Chaplin and Paul...

Image via Wikipedia

Faithful readers of this blog know that I like to regularly share various news items that I find interesting or otherwise tickle my fancy, most of which have at least some peripheral relationship to Multiple Sclerosis. Here's another such collection, along with some commentary. This compilation includes items that range from the extremely serious to the extremely silly, which more or less reflects the real life balance needed to maintain one's sanity. Even though we're dealing with a serious illness, we don't need to be serious about it all the time. In any event, I'll try to put these in some semblance of order, in descending rank from serious to silly…

  • "Multiple Sclerosis Will Become a Controlled Disease like AIDS" screams the headline of this article (click here), which talks about some of the breakthroughs that geneticists have made in identifying genes associated with MS. While these discoveries are both encouraging and fascinating, transforming MS into a controlled disease falls far short of the expectations and wishes of those afflicted with the illness. While controlling MS is certainly preferable to just letting the disease run rampant through our brains and spines, it sure would be nice to see the scientific bar raised a bit, to include at least a cursory mention of the possibility of a cure.

    As anybody knows who lived through the scourge of AIDS in the 1980s and 90s, a time when people were being buried at a tragic and distressing rate, the fact that AIDS is now for the most part controllable by means of a cocktail of strong antiviral medications is definitely a huge relief. Certainly, the hunt for a cure for the disease hasn't been abandoned, but you can't help but think that the fact that the disease is now considered controllable has lowered the urgency of that endeavor. I'd hate to see the same situation arise for MS, but in reality, I suppose it already has.

    The advent of disease modifying drugs that do nothing to address the still mysterious root cause of MS, but which have been a tremendous financial boon to the pharmaceutical industry, has almost certainly dampened research efforts to hunt for the genesis of the disease. The fact that these drugs are tremendously expensive and must be taken for the life of the patient has turned MS into a multibillion dollar a year windfall for pharmaceutical companies. Since these companies fund over 70% of the medical research done in this country, and they are public companies whose mission is to constantly increase profits, their money flows towards research that shows the potential for tremendous financial return, which most often takes the form of blockbuster immunosuppressive or immunomodulating drugs.

    Many neurologists have expressed genuine shock over the tremendous emotional embrace given by the MS patient population to the CCSVI hypothesis and the Liberation Procedure used to address it. This surprise on the part of the physicians exposes a serious disconnect between MS Neuros and their patients. MS sufferers innately know that the sometimes extremely toxic drugs they are being given will in no way free them from their disease. They may improve a patient's quality of life by cutting down on MS relapses, but they do nothing to slay the enemy within. Since CCSVI apparently offers at least the hope of a cure, patients have latched onto the theory like shipwreck survivors grasping at life preservers. Regardless of the ultimate outcome of the CCSVI debate, hopefully the patient-doctor dynamic has forever been altered, and even if CCSVI turns out to be less than we now hope it will be, patient driven initiatives will help jumpstart the search for a cure.

  • Speaking of disease modifying drugs, the FDA has approved the first oral treatment for RRMS. Developed by the pharmaceutical company Novartis, the drug is called Gilenya, formerly known as Fingolimod or FTY 720. This is the first MS Disease Modifying Drug that doesn't require injections or intravenous infusions (click here for info).

    Hooray, right? No more sticking yourself with needles, or spending several hours a month in an infusion suite, what could be bad about that? Well, unfortunately, potentially quite a bit.

    During trials, Gilenya was found to increase the chances of developing severe, sometimes fatal infections, as well as an increased propensity for melanoma, a deadly skin cancer. In addition, there was some association of the drug with adverse vascular events, macular degeneration, and the possibility of lymphoma.

    On the plus side, Gilenya does dramatically decrease the relapse rates of patients taking it, and also dramatically cuts down on the number of enhancing lesions seen during MRI imaging. There is also some evidence that the drug may be neuroprotective, one of the holy grails of MS research, and for that reason it's currently being trialed on PPMS patients, for whom there are no approved, or even unapproved, treatments. Gilenya may also slow disease progression, another holy grail of MS research.

    I find the mechanism of the drug somewhat troubling, though. Like Tysabri, Gilenya inhibits the ability of immune system T cells to gain entrance to the Central Nervous System, where they significantly contribute to the CNS damage seen in MS patients. While Tysabri accomplishes this by blocking T cells from crossing through the blood brain barrier that separates the Central Nervous System from the rest of the body, Gilenya keeps T cells trapped in the lymphatic system, not only restricting their access the CNS, but to the rest of the body as well. In effect, Tysabri keeps the cops out of one specific neighborhood, but Gilenya keeps them trapped in the police station. Since the compound was only trialed for two years, no one can say for sure what the long-term effects of so profoundly altering our delicately balanced immune systems might be. Sounds like many doctors are going to be cautious about this drug, at least at first (click here for info).

    On an interesting side note, Gilenya is derived from an ancient Chinese herbal remedy called Cordyceps, which is a fungus that grows on the back of caterpillars, and is purported to have many medicinal properties, including those of an aphrodisiac. It's also supposed to increase blood flow and oxygen supplies throughout the body (possible CCSVI implications?) (click here for info). Cordyceps is available through online vitamin and herbal supplement retailers (click here), but I'm not sure what alterations were made to the compound when Novartis synthesized and patented it. Strangely enough, Cordyceps in its raw form is known to increase the activity of the immune system, but some MS patients do report it helps their MS fatigue.

  • In yet more drug news, the FDA has approved Nuedexta (click here for info), the first drug designed to combat "emotional incontinence", otherwise known as the pseudo-bulbar affect (click here for info). Some MS and ALS patients suffer from a very strange symptom: the inability to control their emotions, which often leads to inappropriate fits of laughing and crying. I must admit, I do get awfully weepy at some movies, and have even been known to cry at commercials, but these reactions predate the onset of my MS. Throw "Casablanca" in the DVD player, and I'm apt to start crying from beginning to end. What can I say? I'm hopelessly smitten with Ingrid Bergman, and when Humphrey Bogart makes the ultimate sacrifice, letting the love of his life, once lost but then found, fly off with another man in the name of a greater cause, well, pass me the tissues, and they'd better be two ply…
  • It appears that a slightly bonkers British chap has eclipsed me as a real Wheelchair Kamikaze. Seems this bloke has attached a gasoline engine to a standard mobility scooter, and reached speeds approaching 70 mph (click here). Hey, my hats off to him, and I heartily applaud his efforts. Wait a second, since he's using a scooter, I guess I can still hold onto my Internet moniker. He's the Scooter Kamikaze. And, in keeping with mobility device kamikaze tradition, he made a pretty cool video of his exploits…
  • And in news that has nothing at all to do with MS, it seems that a time traveler has been caught in a 1928 film starring Charlie Chaplin. In the background of a scene in the Chaplin film "The Circus", it appears that a woman walks by apparently talking into a cell phone. Of course, cell phones weren't invented back in 1928, so her actions are quite mysterious. I love the idea of time travel, and if one day I seem to simply disappear, look for me back in 1935, dancing a mean jitterbug at The Savoy Ballroom in Harlem, burning my shoe leather to some big band version of Fats Waller's "This Joint Is Jumping". I'm assuming, of course, that traveling back in time would cure my MS. Anyway, here's a piece from the Chaplin film, showing the alleged time traveler…
Enhanced by Zemanta

Monday, November 1, 2010

National Public Radio Segment on CCSVI Postponed

Photograph of a young girl listening to the ra...

Image via Wikipedia

In my previous post, I plugged an upcoming National Public Radio segment on CCSVI that I had been interviewed for a few weeks ago. It was supposed to air this morning, on NPR's "Morning Edition" and I was surprised/disappointed when it failed to hit the airwaves.

I contacted the reporter who interviewed me, and was told that because there are several crucial reports on CCSVI due to be released in some of the major medical journals in the near future, and because NPR wanted to interview Dr. Zamboni and Dr. Zivadinov (who is conducting intensive research on CCSVI at the University of Buffalo) for the piece, that it was being held back until some time in the relatively near future, probably after the holidays.

Sorry for the confusion, I was as surprised as anybody. I will of course keep everyone informed once I get word of when the piece will actually air.

And so, the national US media silence on CCSVI lives on, at least for another couple of months. Actually, print pieces have been run in the New York Times and the Wall Street Journal, but who's counting…

Enhanced by Zemanta

Thursday, October 28, 2010

A Roundup of CCSVI Info: Thoughts and Observations

The veins of the neck, viewed from the front.

Image via Wikipedia

But first, a little shameless self-promotion: I was recently interviewed for a radio piece on CCSVI that will be airing on National Public Radio this coming Monday, November 1, between 6 AM and 9 AM, during their Morning Edition program (click here to find the NPR station in your area). I have no idea how much of my interview they'll use, and wouldn't at all be surprised if only a few seconds of my voice is heard. Still, it was very flattering to be asked to participate, and it's also very encouraging that NPR is doing a segment on CCSVI, which has been largely ignored by the US media. For everyone who misses the live broadcast, the segment will be archived on the NPR website, and I'll post a link as soon as it's available.

And now, on with the show. I haven't written about CCSVI in quite some time, so the below post is very long, almost twice as long as any other piece I've ever posted. You might want to grab a cup of coffee and a couple of toothpicks to hold your eyelids open before attempting to plow your way through it…

The topic of the vascular theory of MS, which was initially hypothesized by Italian vascular surgeon Dr. Paolo Zamboni, and has come to be called CCSVI (Chronic Cerebrospinal Venous Insufficiency), continues to inflame the MS community among both patients and physicians alike (if you're unfamiliar with CCSVI, please click here). At times the debate over the validity of the CCSVI theory and the efficacy of the procedure used to address it (known as "The Liberation Procedure") has reached the level of hysteria on MS Internet forums, countless CCSVI Facebook sites, and in the print media, with outrageously hyperbolic statements pouring forth from both sides. The most fervent CCSVI advocates claim with absolute certainty that CCSVI is the cause of MS, and that the Liberation Procedure is a cure for the disease, while the theory's staunchest critics label it a hoax, and those physicians practicing the Liberation Procedure con artists selling desperate patients snake oil.

At this stage of the game, when very few scientifically valid trials have been conducted, both extreme viewpoints have absolutely no basis in fact, and these vehement arguments only confuse the issue all the more, creating adversarial tensions precisely when a spirit of open-mindedness and cooperation are desperately needed. Furthermore, these loudly voiced conflicting opinions can only work to the detriment of chronically ill patients vainly searching for answers that simply do not yet exist, adding clutter and confusion to an already complicated issue.

We are in an age of discovery in regards to CCSVI, and over the last several months much has been learned about the condition and the treatment protocols used to address it, though the picture remains far from clear. Many patients, understandably clamoring for easy access to the Liberation Procedure, argue that the procedure is nothing more than angioplasty, which is performed quite commonly on cardiac patients in hospitals around the world, and that they should be given access to the treatment for the simple reason that blocked veins need to be unblocked, regardless of whether or not a patient has MS. Both of these arguments seem quite valid at first glance, but don't really hold up to greater scrutiny.

Angioplasty is indeed a common procedure, and a very safe one at that. The Liberation Procedure, though, is not angioplasty, which is performed on arteries, but venoplasty, performed on veins, a procedure that is done much less commonly. This may seem like a minor discrepancy, but in fact presents some significant challenges to both the doctors performing the procedure and the technologies used during it.

In terms of anatomy, veins and arteries are very different creatures. The major arteries are quite rigid, designed to withstand the intense pressure of blood being pumped through them by the beating heart. Thus, when they are ballooned or stented open during angioplasty, they tend to stay open, given their natural rigidity. Veins, on the other hand, are thin-walled and flexible (just play with the ones on the back of your hand to see what I mean), presenting a very different target for the balloons or stents used during the Liberation Procedure. Virtually all of the equipment used during the Liberation Procedure was originally designed for utilization in arteries, and this has led to less than ideal efficacy when used in veins, as I will discuss in more detail a bit later. From a safety standpoint, as long as the procedure is confined to the use of balloons to open narrowed or blocked veins, the Liberation Procedure is quite safe.

As for the assertion that blocked veins need to be unblocked regardless of the overall health of the patient, this too is not as clear-cut as it first may seem. Since arteries are the primary culprits in cardiac disease and strokes, human venous anatomy has been very little studied by modern medicine. Incredible, but true. I've been told by several radiologists and vascular specialists (including those at the National Institutes of Health) that there truly is no definition of "normal" that can be used as a benchmark when assessing an individual patient’s venous system.

Indeed, initial studies have shown that up to 25% of healthy people appear to have the vascular blockages known as CCSVI, to no apparent ill effect (click here for info). Venous anatomy is redundant and adaptable, and it had been thought that blockages in veins are largely compensated for by this adaptability. Blood flow blocked in one vessel was assumed to be simply routed through another, or through new vessels grown by the body to make up for the blockage, called collaterals. Perhaps one fringe benefit of the investigation into CCSVI will be closer attention paid to venous anatomy on the whole.

It's important to keep in mind that Dr. Zamboni's theory involves not only blockages in veins, but more precisely, the reflux of deoxygenated blood back into the central nervous system caused by those blockages. Therefore, not all venous blockages meet the requirements of CCSVI.

My own case is a perfect example. A catheter venogram revealed that I have a significant blockage in my right internal jugular vein. Further testing indicated that this blockage is quite unusual, as it is not caused by an abnormality internal in the vein, as is the usual case, but rather by an external muscle pinching the vein significantly closed. The Interventional Radiologist who did my procedure reviewed my case with Dr. Zamboni, who is of the opinion that although my vein is clearly blocked, this blockage has not resulted in a turbulent backflow of blood, and therefore should not be treated. Not really what I wanted to hear, but facts is facts. I do plan on getting further testing to confirm Dr. Zamboni's opinion.

Earlier this month, one of the major international MS conferences took place in Sweden. Known as ECTRIMS (European Committee on Treatment and Research in Multiple Sclerosis), this year's conference featured many presentations on CCSVI, which in itself is something of a victory. During last year's conference nary a word about CCSVI was mentioned.

Much of the evidence presented at ECTRIMS was mixed, on the whole seemingly confirming a correlation between Multiple Sclerosis and the vascular abnormalities known as CCSVI, but also casting some doubt as to whether or not CCSVI is a cause, rather than an effect, of Multiple Sclerosis. Dr. Robert Zivadinov, who leads the team of researchers vigorously investigating CCSVI at the University of Buffalo, presented several very interesting papers. One paper demonstrated that the severity of CCSVI increases with the severity of Multiple Sclerosis symptoms experienced by patients, and with a more advanced disease course (click here for abstract). These findings were backed up by papers presented by researchers from Beirut (click here for abstract) and Italy (click here for abstract). If CCSVI were the cause of MS, the researchers would expect that a constant level of vascular abnormalities would be seen across the entire spectrum of disability levels and duration of disease among patients studied, which is not what their studies demonstrated. Other research presented at the conference contradicted these findings, such as a paper presented by Dr. Marian Simka, an Interventional Radiologist in Poland who has done hundreds of Liberation Procedures, which found that CCSVI plays a role in the cause and progression of MS, and that the vascular abnormalities were most likely congenital (click here for abstract).

Another study presented by Dr. Zivadinov found that subjects who presented with CCSVI had significantly more lesions and brain atrophy as measured by MRI than those MS patients without vascular abnormalities (click here for abstract). Yet another investigation presented by Dr. Zivadinov looked at the correlation between a gene implicated with MS, and CCSVI, and found that the data supported an association between MS disease progression and CCSVI separate from the suspect gene. The implications of these findings are that CCSVI could be a risk factor in developing the disease, or a result of the progression of MS (click here for abstract).

Clearly, the data presented at ECTRIMS was a mixed bag, which some CCSVI advocates found disappointing in that much of the evidence offered did not point to CCSVI being a direct cause of MS. Still, the studies did reveal a very strong correlation between vascular abnormalities and Multiple Sclerosis, which in itself is a giant step forward in convincing a dubious scientific community that these abnormalities do play a significant role in the puzzle that is MS. Much more research is needed to resolve the challenging questions posed by CCSVI, and such research is ongoing at the present time in multiple locations worldwide.

Some staunch CCSVI advocates have tried to dismiss research with findings not to their liking by claiming that the methodology used was faulty, or that the researchers themselves were tainted by their associations with pharmaceutical companies. As for the methodology used, it may be different than that originally used by Dr. Zamboni, and thus might in fact be invalid, but it does occur to me that the physical abnormalities found in CCSVI are not subtle in nature. We are talking about rather severe blockages in blood vessels, significant enough to cause blood to actually flow backwards through those vessels. It would seem that abnormalities of this magnitude should be detectable by more than one set of extremely specific methods of measurement. But, as I stated previously, venous anatomy has been little studied in the past, so perhaps the technological choices are indeed limited.

As for researchers whose integrity has been compromised by their ties to pharmaceutical companies, if all such physicians were prohibited from taking part in research studies, there would be practically no medical research conducted at all. A tragic truth about our current medical system is that almost every physician practicing in the United States has some affiliation with a pharmaceutical or medical device company. This phenomenon is not limited to neurologists, as some would make it seem, but is epidemic throughout the medical community. A wide range of doctors have affiliations with drug companies; orthopedic surgeons have relationships with the makers of artificial joints (click here for a fascinating New York Times article on this), cardiac surgeons are courted by the makers of replacement heart valves, and Interventional Radiologists have associations with the makers of the stents, catheters, and balloons with which they ply their trade. I've said it before, and I'll say it again, capitalism is a wonderful engine for driving an economy, but is absolutely corrosive when applied to the practice of medicine. When patients are viewed first as consumers of medical products and services, something is seriously wrong. I previously expounded on this disturbing topic in a previous post, "The Medical Industrial Complex: Sick People Required", which you can access by clicking here.

One of the big problems involved in the study of CCSVI in that none of the noninvasive imaging techniques used to try to detect venous abnormalities in patients before having them undergo an invasive catheter venogram are all that reliable. MRV imaging in particular has proven to be almost worthless, as yet another study conducted by Dr. Zivadinov and presented at ECTRIMS demonstrated (click here for abstract). Doppler Sonography, while more accurate, is only useful in detecting CCSVI when used according to very specific protocols, and conducted by a highly skilled operator. Even when such conditions are met, Sonography is somewhat subjective, as the Zamboni trained sonographer who did my Doppler scan has said. Sonograms can be interpreted differently by different physicians, and time after time both MRV and sonogram imaging done on patients have proven to be unreliable once a catheter venogram is performed. The blockages suggested by the noninvasive techniques simply don't correspond to what is actually found in patients when the catheter is inserted into their veins.

While the academic questions regarding CCSVI are all very interesting and fodder for great controversy, the biggest question for those of us suffering from Multiple Sclerosis is whether or not the Liberation Procedure can relieve our symptoms. If it turns out that the procedure is a cure, well, then MSers have hit the jackpot. If liberation "only" results in a dramatic drop-off in the misery caused by the disease, it's still a huge win, and will forever change the way MS is researched and treated. More importantly, hundreds of thousands of MS patients around the world will have a new and relatively straightforward conduit to relief.

Since no formal treatment studies have been conducted thus far (several are currently underway), we can only rely on the anecdotal accounts of patients who have undergone the Liberation Procedure when assessing its effectiveness. It's been estimated that over 2000 procedures have been performed in various locations around the world, but we've only heard from, at most, perhaps 100-150 of these patients. When assessing these accounts, which are usually quite encouraging, it's important to keep in mind that the preponderance of mostly positive reports related on Internet forums and YouTube videos are a product of the natural phenomenon of people who have positive outcomes to be much more inclined to make their results public than those with negative experiences. This isn't an attempt at subterfuge on anybody's part, but merely human nature. Reports from several clinicians doing the Liberation Procedure indicate that the success rate is less robust than might be inferred from Internet accounts. Still, some important trends can be identified in the anecdotal reports available.

It does appear that the Liberation Procedure does positively impact MS symptoms for a significant portion of the patients on whom it is performed. These positive results range from dramatic to slight, but another significant portion of patients, albeit a minority, report receiving no benefit from the procedure at all, some even telling of a worsening of their condition post procedure. We are also seeing the very troubling trend of restenosis (veins closing back up) several weeks or months after balloon venoplasty, and also an increasing amount of accounts of problems with stents implanted in patients' jugular veins, primarily in the form of stent thrombosis (clotting), and stented veins stenosing in areas above or below the location of stent implantation.

Although the accounts of restenosis are discouraging for the patients who experience it, their stories speak loudly to the validity of the CCSVI hypothesis and the effectiveness of the Liberation Procedure. Patients tell of experiencing marked improvements after having had the procedure, but then a dramatic worsening when their veins once again collapse. Upon a second attempt at liberation, most of these patients once again experience benefit. Unfortunately, many of these patients restenose yet again, accompanied by the return of their MS symptoms. This is a strong indication that resolving vascular blockages at the very least results in symptom improvement for a significant number of MS patients. However, with the incidence of restenosis far too common, strategies must be developed to address this vexing problem. Obviously, patients can't be expected to undergo repeated invasive procedures (which include a not insignificant dose of radiation) to address a continuing pattern of restenosis.

Stents have been used to treat veins that were resistant to ballooning or were otherwise problematic. The use of stents in the jugular veins has been somewhat controversial from the outset, as all of the available stents were designed for use in arteries, which generally carry a much more robust blood flow than veins, and which narrow in the direction of blood flow. This means that the risk of clotting in arterial stents is much less than in veins, and that any stent getting loose in an artery would only get pushed further into that artery, rather than have a clear path to the heart, which is the case for stents implanted in the jugulars.

As accounts of problems with stents increase, several doctors and clinics that perform the Liberation Procedure have shied away from using them. Since, once implanted, stents generally cannot be removed, the long-term failure rates of stents are also of considerable concern. The only other patient population that regularly receives venous stents are late stage renal patients, whose veins collapse as a result of kidney dialysis. Studies of the patency rates of stents placed in these patients are less than encouraging, finding failure rates as high as 50% after one year (click here for info). While the two patient populations in question are extremely different, the risk of stent failure in the long term is a legitimate concern, especially since the currently available stents were designed for use primarily in thoracic arteries, where they're not subject to the constant bending, twisting, and torque they experienced when placed in the very flexible human neck. Whether or not to allow the use of stents is among the many very difficult decisions patients considering liberation must make. I personally decided that I would not allow their use.

Obviously, large-scale treatment studies are desperately needed to determine not only the efficacy of the Liberation Procedure, but also the best methods and practices for performing it. Currently, the techniques used vary widely from doctor to doctor, with no real consensus among the treating physicians regarding the size of balloons to use during venoplasty, the use and placement of stents, or even what constitutes a treatable stenosis. Furthermore, many of the Interventional Radiologists performing the procedure have commented on the rather steep learning curve involved in getting it right.

Increasingly, it appears that the CCSVI picture is more complicated than originally thought, with more blood vessels (including the lumbar, iliac, and vertebral veins) likely involved. The Liberation Procedure is a work in progress, and procedures done a year from now will probably differ significantly from those done today. Physicians are still in the early learning stages in regards to the treatment of CCSVI, and patients should be wary of being a part of anybody's learning curve. The success rate of Interventional Radiologists who have done numerous procedures appears to be much greater than those with less experience. Again, the decision of what physician to choose needs to be given very careful consideration by patients considering liberation; not just any doctor offering the procedure will be adept in its performance. There is increasingly a "Wild West" environment developing out there, as the prospect of huge financial gains made by offering the Liberation Procedure becomes apparent to physicians worldwide, who might undertake the procedure without the proper training and requisite experience. This is a pitfall that patients need to be very aware of, and must be very careful to guard against. Ask any potential treating physician serious questions, request patient references, and do as much research as possible. Until the myriad questions regarding CCSVI and its treatment are fully resolved, there will be plenty of opportunities for hucksters to take advantage of desperate patients.

A burgeoning medical tourism industry has sprung up around CCSVI, with clinics offering the Liberation Procedure in such diverse locations as Poland, Bulgaria, India, and Costa Rica, for prices generally ranging from $10,000-$20,000. Because of the persistent problems with restenosis, stent thrombosis, physician competency, the necessity for post procedure medical care, and the constantly evolving knowledge base regarding the best standards and practices of the Liberation Procedure, I strongly urge patients to forgo traveling long distances for treatment.

In a best case scenario, in which a patient travels thousands of miles and spends heaps of money to be treated with balloon venoplasty, and finds themselves to be amongst those lucky enough to see significant benefit from the procedure, there is still the large risk (some place it at 50%) of restenosis some weeks or months post procedure. In such a case, the patient would be back to square one, less the large amounts of money they spent on travel and the procedure itself.

Furthermore, aftercare is very important, as patients are commonly placed on blood thinning drugs post procedure. These drugs need to be carefully monitored for months after treatment. If a stent is implanted, it may be quite difficult for patients experiencing complications to find appropriate treatment locally, with the possibility of dire consequences. Keep in mind, too, that there is no guarantee that any given patient will be among those who experience dramatic improvement. One prominent Interventional Radiologist that has performed well over 100 Liberation Procedures estimates that one third of his patients see no benefit from the procedure. Given those odds, combined with the high risk of restenosis and the very small but real chance of medical complications that might arise after liberation, traveling long distances and spending tens of thousands of dollars to pursue treatment cannot be recommended.

Of course, every patient must make decisions regarding CCSVI and the Liberation Procedure based on their own unique circumstances. For the majority of patients, I would strongly advise waiting 6 to 12 months before seeking liberation, as much more information from both academic and treatment research studies will be available, and some standardization and identification of best practices will be achieved in the coming months by the Interventional Radiologists performing the procedure.

It's very important, and very difficult, to make an unemotional and accurate assessment of your own condition and rate of progression. Karen likes to chide me about the fact that I've been saying that I'm six months away from being bedridden for the last three years. Presently, my right side is almost completely paralyzed, and my left side is weakening considerably. Not a good combination. I understand the desperation that all MS patients feel, regardless of the particulars of their state of disability. We all want to just be rid of this disease. But unless your situation is genuinely dire, it will absolutely be in your best interest to allow the science of CCSVI and the techniques that go into the Liberation Procedure to mature, as doctors gain experience and more hard facts about the condition become available. Most MS patients experience a relatively slow progression of disability. Waiting, especially in the face of the hype surrounding CCSVI, is extremely difficult, but in this case might save you considerable bodily wear and tear, significant sums of money, and much heartache. If your situation is genuinely dire, and your condition is rapidly declining to the point that your quality of life soon will be nonexistent, then all bets are off. Do what you feel needs to be done.

I firmly believe that CCSVI will prove to play a major part in the MS puzzle. Like all things related to MS, its impact will vary from patient to patient. For some patients, it may very well be THE answer to their problems, for others only a partial solution, and for others still it may play no role at all. MS is a very complex and frustrating disease, truly a scourge to those who suffer from it. CCSVI offers a light at the end of the tunnel, but there is still much work that needs to be done. Thankfully, dedicated researchers and physicians are actively looking for answers, even in the face of sometimes withering criticism, and their findings may very well result in paradigm shattering changes that rock the world of MS. But it is still very early in the game, and it's important to remember that discretion is often the better part of valor, and that the race does not always go to the swift.

Enhanced by Zemanta