BlogTalk Radio-It's All in the Blog

This past Wednesday, I appeared on an Internet radio show, along with fellow MS blogger Lisa Emrich. The show was graciously hosted by Amy Gurowitz, herself an MS blogger.

I may be a bit biased, but I thought the show was quite interesting, and touched on areas of importance to all MSers, not just those interested in the process of blogging. Lisa, Amy, and I relate the stories of our MS diagnoses (or, in my case, my mystery diagnosis), as well as many of the hot topics currently consuming the MS community. You'll laugh, you'll cry, you'll say to yourself, "How can that guy write so reasonably well, yet talk like he was recently hit in the head with a cast-iron frying pan?"

Just hit the play arrow on the little thingy below to listen to the show.

Listen to internet radio with 1st MS Radio Station on Blog Talk Radio

Share |

Bits and Pieces: CCSVI, MS Meds, The Scum of the Earth, and More…

Image by Marie Carter via Flickr

I'll start out with some shameless self-promotion, because it's my blog and I can do anything I want with it. So there.

On Wednesday, April 20, from 8 PM-10 PM, I'll be a guest on the Internet radio show "MSLOL-Radio: "It's All about the Blog" (click here). Hosted by the ever affable Amy Gurowitz (click here), I'll be joined on the show by Lisa Emrich, MS blogger extraordinaire (click here). Listeners will be able to ask questions via phone or instant message, so you'll be able to join in on the fun. Please tune in, if only to hear how many times I can say "um" in a single sentence…

The MS universe was dominated this past week by news coming out of the annual meeting of the American Association of Neurology, this year held in Honolulu, Hawaii. Yes, those neurologists have it rough. There were lots of presentations given on a slew of drugs currently making their way through the research trial pipeline (no shock there), and some controversial reports on CCSVI (no shock there, either). I'll also throw in a few other items of interest (at least my interest), so hopefully you'll find this edition of Bits and Pieces worthy of your time and attention…

• First, The CCSVI Department: the big CCSVI buzz out of Honolulu was the publication of a paper detailing the results of the Buffalo Neuroimaging Analysis Center's Doppler ultrasound study of MS patients and healthy controls. The initial results from the study were first released over a year ago, but this is the first time they were published in a medical journal (click here).

  The Buffalo researchers found that about 55% of MS patients tested positive for CCSVI, as did about 22% of healthy control subjects. Additionally, about 45% of patients with other neurologic diseases also tested positive for CCSVI. While there is some dispute over the accuracy of the numbers, especially those of the healthy control subjects, some of whom were family members of the MS patients tested (though not all blood relatives), the real ruckus was started by the conclusions of the lead researcher, Dr. Robert Zivadinov, who stated that CCSVI was likely not a cause of MS, but rather appeared to be caused by the disease. This conclusion set off a frenzy of news reports screaming that the entire CCSVI hypothesis had been thrown into doubt (click here and here), and the usual shit storm of debate on Internet MS forums and Facebook pages.

  To my mind, at least, the question of cause and effect is secondary to inquiries as to whether or not treating the venous abnormalities now known as CCSVI actually help the symptoms of MS patients. This can only be ascertained by doing robust treatment trials of CCSVI venoplasty, some of which are already underway, with more coming (click here). The study does show that there is a high correlation between venous blockages and MS, a finding that alone warrants much more study. For some very good reporting on the Buffalo study, please watch the two videos at the top of this article (click here), produced by CTV of Canada. The second contains a substantive interview with Dr. Zivadinov himself, who clearly thinks that his findings do not invalidate the CCSVI hypothesis, but instead beg for robust follow-up studies.

• The MS Meds Department: predictably, since almost all MS research is funded by big pharmaceutical companies, the MS portion of the AAN meetings was dominated by progress reports on new MS drugs working their way to the market. Two new oral drugs, Biogen's BG-12 (click here) and Teva's Laquinimod (click here) both showed positive results, although the Laquinimod results were found by some (investors) to be disappointing (click here). Interestingly, BG-12 appears to work, at least in part, by being a neuroprotective agent (click here), unlike most other MS drugs, which are designed to primarily suppress or modulate the immune system.

  The MS vaccine Tovaxin, once given up for dead (click here), has apparently risen from the grave, as its manufacturer, Opexa, released positive test result data (click here). According to the research, Tovaxin works best on patients who have had no previous exposure to any other MS disease modifying drugs. Not surprisingly, the price of Opexa stock went through the roof on the news (click here). I'll refrain from making my usual snarky comment about the crass commercialization of disease, and how much it makes me want to vomit. Whoops, looks like I didn't do such a good job at refraining…

  The most dramatic pharmaceutical findings involve a drug known as Campath, produced by Genzyme, which appears to be startlingly effective in eliminating MS symptoms in patients, even for years after they've stopped taking the drug (click here). Campath is a drug given by infusion two or three times a year, and the recently released findings, which involved patients who had taken the drug for three years, showed that after five years 65% of treated patients were free of clinically active disease, and 87% were free of accumulated disability. The drug is not without its downside, though, as 30% of treated patients developed autoimmune thyroid disease. Campath is also associated with a potentially serious blood clotting disorder, and an increased incidence of respiratory and other infections.

  The problem, of course, is that none of these drugs address the underlying cause of MS, which remains unknown. Drug companies are making so much money by finagling with patients' immune systems, and turning those patients into customers for life, that very little research into the mysterious disease trigger, or, more likely, triggers, has been funded and undertaken in the 20 or so years that the autoimmune theory has reigned supreme. This should have every MS patient outraged. Unlike some other MS activist, I can't condemn the current MS drugs en masse, since they do increase the quality of life of a proportion of patients taking them, but the lack of research into the roots of the disease does make my head explode.

• This brings us to The Root Cause Department: a recent look at disease clusters in the US found an MS cluster in the small town of Wellington, Ohio, in which 25 cases of MS were reported within the six block radius (click here). This would seem to point to some kind of environmental factor (something infectious or toxic) being involved in triggering MS, at least in some patients. There have been quite a few MS clusters identified through the years, but none has ever yielded answers as to what created it (click here). Though these clusters don't prove anything, they do provide plenty of food for thought.

  In my opinion, what we call multiple sclerosis could very likely be a collection of similar diseases, with a wide variety of causes and triggers. Certainly, a genetic predisposition appears necessary, and from patient to patient the trigger that sets off that predisposition very likely varies. Possible triggers could include vascular problems, infectious agents, toxins, dietary and vitamin deficiencies, or a combination of factors. I think it very likely that future MS therapies will need to be tailored to each individual's particular disease characteristics. Of course, the problem lies in sorting all of this out, a process to which tragically few resources are currently being devoted. Too much money to be made figuring out new and better ways of stomping on the human immune system…

• The What the Fuck Is Wrong with the World Department: I have recently been coming across way too many accounts of crimes being committed against MS patients. From scooters and wheelchairs being stolen (click here and here and here), to MS patients being robbed and assaulted (click here and here) to people masquerading as MS patients in order to make off with donations to MS nonprofits (click here), it's enough to shake my already fragile faith in humanity. I suppose we live in desperate times, but preying on the infirm should warrant some kind of extraordinary punishment. I know that we have supposedly evolved past a simple "eye for an eye" system of justice, but it would be extremely satisfying if the scumbags perpetrating these acts could somehow be given an extremely aggressive form of Multiple Sclerosis. It kills me to watch the nightly news and see a literal parade of the deranged and demented marching past the cameras, walking with ease despite having their hands cuffed behind their backs and hoodies pulled over their heads. I've learned not to expect a whole lot of justice out of the universe, and the notion that life is fair was long ago rendered laughable (even before my diagnosis), but the sight of rapists, murderers, and child molesters sauntering off to jail without so much as a limp calls into question a wide variety of belief systems…

• The Do You Really Want to Know Department: the Mayo Clinic has developed a test which could indicate how fast a patient who has progressed from RRMS to SPMS will accumulate disability (click here). I certainly understand the practicality of possessing this knowledge, as it would allow for planning and preparation, but I'm really not sure I'd want to know. In some cases, ignorance is still bliss. How about you? Would you want to know?

• The Eye Candy Department: one of the unexpected pleasures I've had in writing this blog is getting to meet (even if only through e-mail) interesting people from all over the world. WK reader Paulien Bats, from Groningen, the Netherlands, is an illustrator with MS who recently created the image below. I really like it, and not only because Albert Einstein is one of my main men. It's copyrighted and all that stuff, so please don't steal it. Thanks, Paulien…

.

Essence

In my last post, I talked about becoming "The Accidental Alien" (click here), my mounting physical disabilities forcing me to make my way through an increasingly strange world designed by and for people with fully functional limbs. The adaptations needed to adjust for functional deficits involve not only the body, but the mind as well. As more and more of the outside world creeps beyond the reach of diminishing physical abilities, the inner self must begin jettisoning vestigial notions of identity that simply no longer apply. Objects once immensely useful, and sometimes cherished, are stripped of their functional value, and with them parts of our identity are stripped away as well.

Our sense of self is inevitably influenced by the outer world and our place in it as we make our way through life and undergo the many changes our paths require, some chosen and some imposed. In our consumerist society the link between material objects and self-identity begins at a very early age. I vividly remember the embarrassment of discovering, in the fourth grade, that I was wearing the "wrong" sneakers. Forty years ago the choice of children's athletic footwear was miniscule compared to the mind-boggling galaxy of brands and models that exist today, but even so, wearing an inferior brand (in my neighborhood, they were called "skips") meant you were somehow an inferior person, worthy only of scorn and ridicule.

Even as a kid, I recall instinctively realizing how asinine this notion was, and yet the social pressures were such that it was impossible not to buy into this ridiculous narrative. Though my no-name sneakers were perfectly functional, I was mortally embarrassed to be wearing them, as they weren't Pro-Keds, Converse, Adidas or, the holy of holies, the hallowed king of all 1970s boys footwear: majestic blue suede Pumas, called "Clydes" because they were endorsed by Walt "Clyde" Frazier, a New York Knick and all-time basketball great.

Clydes were so out of reach for most of the kids in my blue collar Queens neighborhood that when one of my classmates suddenly showed up wearing a pair, all the rest of us could do was stare, rendered speechless by wonderment and intense envy. Suddenly, this boy who had been strictly middle of the pack was now elevated to the top of the pecking order. We knew it, and, more importantly, he did too, and he fully embraced the part. He was cool, and I was not, sentenced to fourth grade social purgatory by my mortifying footwear.

To my eternal ecstasy, in the summer between the fourth and fifth grades, my dad surprised me with a pair of blue suede Clydes, and on the first day of the fifth grade, I was met with a gallery of the same stunned expression I had worn the year before, the eyes of all of the boys in my class fixed unblinkingly on my feet, an astonished look of shock and awe frozen on their faces. Funny thing was, I had grown so used to wearing the shoes over the summer that it took me a few seconds to realize what had elicited such a reaction. When I finally made the connection, man did it feel good. I found my 10-year-old self almost magically transformed, my blue suede sneakers the elementary school equivalent of Cinderella's glass slipper.

As I grew into an adult, I found this same strange interplay between the inner self and outer perceptions repeated time and time again. In my 20s I was the bohemian rock 'n roll rebel, and my black leather jacket, tight blue jeans, and Spanish healed boots proved it, just like it did for all the other nonconformists I hung out with, who all wore subtle variations of the same exact outfit. Of course, my self-identity wasn't rooted entirely in the clothes on my back, as it was that identity which led me to choose the way I presented myself to the world. The relationship between inner and outer self is symbiotic, each feeding off each other, in a twisting and ever ongoing interplay. Still, I remember slipping into my first black leather jacket, and the giddy sense of self satisfaction that it conferred. I just couldn't have been more impressed with myself.

As more years flew by, the interdependence of what I owned and who I was continued its complex dance. After all, the clothes we choose to wear, the furnishings that decorate our homes, the careers we pursue, the cars we drive, even our mates, all represent the identity we elect to reveal to the outer world. For some, that display is in close concordance with the inner person, for others, it really is a show, a contrivance, some consciously hiding their real selves behind a blinding array of baubles, bangles, and beads. It's important to learn how to recognize these folks, and avoid them, because for the most part they are trouble. They may not actually mean harm, though many do, but the dissonance between their projected self and the inner person very often causes conflict and stress within themselves, and then to everyone around them.

By the time of my MS diagnosis at age 39, the interplay between the inner me and the objects I selected to represent myself to the outside world were a finely woven fabric. Unless a person chooses to live a monastic lifestyle, this meshing between the inner and outer, given the hyper consumerist world we live in, is inevitable. Even the monk, with his threadbare cloak and vow of poverty, has chosen a lifestyle that is a statement to the outside world. After all, one can be threadbare, poverty-stricken, and pious without advertising it by taking an oath and donning a cloak and sandals.

When I was diagnosed with progressive MS, I was many things; a DVD producer, the husband of a lovely woman, the driver of sports cars, a collector of antique watches, a socially active Manhattanite, a sharp if funky dresser (if I must say so myself), a dog owner, and dozens of other labels and projections that influenced not only how others perceived me, but also how I perceived myself. Suddenly I had a new tag, Multiple Sclerosis patient, and one with an aggressive form of the disease at that. This new label would soon mushroom and overtake many of my other outward incarnations, as my diminishing physical abilities forced me to give up many self-defining activities and diversions, and rendered many of the objects I once held precious completely and utterly useless.

Like opening a Russian doll within a doll within a doll, the disease, as it whittled away at my physical abilities, forced me to psychologically peel back layer after layer of shifting self-identities. I found that this process is not without pain, as some of those once projected and now obsolete selves were founts of much pride. Some were badges of honor, others bandages covering old wounds. Stripped of outer distractions and contrivances, and in relatively short order forced to "retire" from the working world, I was left to ponder what was left of me in the absence of a lifetime of accumulated pacifiers, identifiers, and diversions. The process can be downright scary, as it leads one to consider one of the crucial questions of the inner universe: at my essence, who am I?

Just as a chemist works to break down complex compounds to discover the individual molecules from which they are made, chronic progressive illness puts a personality under mortar and pestle, grinding away the web of complexities that buffer the core of a person from themselves and from the world at large. As my illness has forced me to adopt a simpler life, it's also brought forth a simpler Marc, living an existence almost preadolescent in nature. Strangely, along with restoring a kind of innocence, the experience has coalesced much of the wisdom I barely knew I had accumulated through the years, in many cases insights that I hadn't consciously realized I possessed at all, many of which would've certainly come in handy when I was healthy. It has allowed me time for introspection, time much needed to digest all of the changes wrought, time required to assimilate both the losses and the gains.

Despite the uncertainties concerning my physical condition, I've discovered an intellectual confidence, and the ability to be alone without being lonely. I often used to crave the companionship of others, even though I frequently felt alone in a crowd. Still, that crowd offered comfort and distraction. Gone is the desire for bright lights and constant action, replaced with the knowledge that the greatest blessing on earth is a quiet night at home with loved ones. Faced with serious illness, all abstraction is stripped from the concept of mortality, and I've come to value quality over quantity. My patience for trivialities, some of which used to consume me, quickly dwindled, and continues to do so.

I find that I value honesty and kindness more than ever, in myself and those around me, and that the person it's most difficult to bestow those two gifts upon is yourself. In the harsh light of progressing disability, past mistakes and missed opportunities become brightly illuminated, and the challenge lies in not only learning from those faults, but also in forgiving yourself for making them. Taking inventory of oneself can be difficult when some of the items discovered in the darkest corners of the soul have been shoved out of sight for a reason. But in confronting them, their negative influences, some of which have manifested for decades, can be weakened and even broken. Although physical limitations may continue to mount, emotional liberation can be achieved.

It is in so many ways a heartbreaking shame that this opportunity at self-knowledge comes at such a dire cost. Without confronting crisis, though, the motivation for such inner exploration is very easily lost among the constantly shifting circumstances of existence. Receiving a serious diagnosis has the effect of pressing the pause button on the ever unfolding story of a life. The emotional process of confronting chronic illness is searing, but it is this conflagration of the soul that allows for the exposing of the essence within. It is a process, I think, that is never fully complete, and as the physical insults inflicted by the disease mount, it becomes clear that it is the journey, not the destination, from which all lessons are drawn.

I will forever curse this creeping paralysis, but at the same time acknowledge the opportunity for self-illumination it has provided. I've rediscovered parts of myself I hadn't even realized I'd lost. Even as my physical abilities diminish, my essence becomes more and more revealed. The battle with the disease continues, bolstered by a refreshed resoluteness of spirit.

The Accidental Alien

Imagine for a second that you're a perfectly healthy, able-bodied person, minding your own business, walking down a quiet suburban street just after nightfall. Suddenly, you are caught in the tremendous vacuum of a strange whirl of blue light, and you feel yourself abruptly whisked right off the face of the planet. Milliseconds later, you find that you've been deposited on an alien world, transported by some kind of rip in the time space continuum. Hey, it's unlikely, but so was Frank Sinatra marrying Mia Farrow. Shit happens…

After getting up and dusting yourself off, you start to look around. Everything seems fairly normal; the sky is blue, the grass is green, and the sunshine feels warm on your face. You walk around for a bit, and although you don't see any of this new place's inhabitants, you do start to notice certain oddities. Approaching a fairly ordinary looking building, you can't figure out how to use the door. There seem to be way too many knobs and buttons on it, and no matter which you twist or push, the door won't open. You see vehicles on the street, which you recognize as the equivalent of automobiles, but looking in their windows, none of the controls are recognizable. As you make your way towards what appears to be the center of town, you come across a variety of objects that seem familiar but at the same time odd, all of them somehow strangely complex.

You turn a corner onto the main drag, and are shocked to see the residents of this peculiar new world. They have the familiar head and torso of a human being, but instead of two arms, they have four, and on the end of each arm is a hand with 10 fingers. They also have four legs, two pointing forward, and two pointing back, but are able to orchestrate all of these extra limbs with perfect fluidity and grace. Oddly, they notice you, but don't really make too big a deal out of your presence. Certainly, they make no move to harm you, and in fact seen kind of indifferent to you.

After composing yourself, you head for what looks to be a restaurant, and walk through the propped open front door. The scene inside is stunning, the place is filled with these eight limbed, 40 fingered creatures, drinking, eating, and having a good time, while using a variety of exotic tools and utensils that require the use of all of those extra arms and hands and fingers. You take a seat, but it's hard for you to get comfortable, because the chairs and tables are designed to accommodate two extra legs and feet, and the menu is almost impossible for you to open, it's many folds and pages meant to be manipulated by folks with a whole bunch of extra extremities.
Overcome with anxiety, you bolt to the bathroom to splash your face with some cold water. Luckily, the door simply pushes open, but once in the bathroom you find an almost impossible to understand array of gadgets and fixtures, all of which require the use of more extremities than you possess. As you explore the rest of this world, the situation repeats itself over and over again. Everything appears frustratingly familiar, but actually using any of this planet's devices is damn near impossible, all having been designed for beings with abilities far beyond your own.

The above describes the feelings and situations I often experience as a disabled person here on earth. I find myself stuck in a world in which I can no longer easily function. Amidst an abundance of gadgets, conveniences, and everyday items that require ten fingers, two hands, two arms, two legs, and two feet, I find myself at times helpless.

A knife and fork are terrific tools for carving up a meal, unless you're reduced to only using one hand, in which case a fork without its trusted companion, the knife, becomes an instrument of frustration and dismay. Zippers, buttons, shoelaces, and socks might as well be Rubiks cubes, there's no way I'm ever going to figure out how to use them. Showering with one side of your body completely disabled requires creativity on the level of Picasso and the stamina of a triathlete. I spend my days adjusting to life in a world designed by and for creatures with abilities that are now far beyond my own. And since the upshot of having a progressively disabling disease is that it progresses, with new disabilities layering upon older deficits, the act of adjustment is a perpetual process. Settle into one routine, and soon enough that routine is no longer routine, and it's time once again to adjust.

We live in a hyper materialistic society, consumer goods being dangled in front of us by a whirlwind of marketing and advertising. When I was able-bodied, I was as much a sucker for the siren call of the newest, shiniest, and brightest as the next guy. I'd satisfy my cravings for one car, only to have my consumerist fires stoked a few months later by a fancier or faster new model. These days, I could just as easily will myself to fly as to drive a car.

On the corner of my street is an Apple Store, with lines of anxious consumers often snaking down my block, all eager to get their fully functional hands on the slickest and most ergonomically designed doodads thought up by Steve Jobs and crew. Ergonomically designed? Ha! As far as I'm concerned, most of those devices might as well be made out of barbed wire and broken glass, as my one-handed approach just isn't going to cut it with the latest super iThing.

I turn on the TV and have to laugh at the endless stream of commercials for products that are impossible for me to use. Cars and shoes and exercise devices and electronic thingamajibs of all kinds, some of which I might have formerly found irresistible, but which now hold all the appeal of a burning stick. What the hell am I going to do with an Ab-Cruncher or Shake Weight? I understand that these commercials and advertisements were not meant for the likes of me, but living with disabilities has ripped the veil of consumerism from my eyes, and allowed me to see just how crass and blatantly manipulative are all of these efforts to get folks to mindlessly buy, buy, buy. I mean, does anybody really need an Ab-Cruncher? For goodness sake, if you absolutely must have those sixpack abs, just do some freaking situps and give your Ab-Cruncher money to the charity of your choice, where it might do some actual good.

I am what is known as a "collector". I'll fixate on some items of interest, usually something antique, and start obsessively collecting them. I have collections of old postcards, vintage fedoras, old New York City travel guides, and World's Fair paraphernalia, among others. When I was healthy, my biggest collecting obsession, by far, was antique wristwatches. I loved them, was fascinated by their intricate mechanical workings, learned the history of their various manufacturers, deeply appreciated the craftsmanship and art that went into making them, and spent huge gobs of money on them. I wound up with a collection of over 50 of the suckers, most from the 20s and 30s. Many have inscriptions carved into their backs, often dedications from loved ones, or sometimes just a person’s name or initials. These inscriptions would fire my imagination, and I'd picture the circumstances under which the watch was bought and treasured by some long-ago person.

I delighted in in the fact that my collection was actually functional, and I loved wearing a different watch each day. They became my trademark, friends and family often asking about my "watch of the day", and if they showed genuine interest, I'd happily take the watch off, pry open the back, and display the carefully constructed mechanical "movement", gleaming artfully polished metals and gears working in intricate orchestration, proof that in some far-off time it not only mattered what something looked like on the outside, but on the inside as well.

Now, due to my disabilities, what were once my most prized possessions sit up in a closet, hardly looked at for several years. In my current state, I couldn't wind a watch, set the time, or even fasten the leather straps to my wrist. The collector in me still likes knowing that I have them, and from a financial point of view, they've appreciated in value, but in many ways my watches have come to represent the alien I have become on my own planet. Yes, the proof of my otherworldliness quite literally surrounds me, in almost every commonplace item I encounter. But there's something about those watches that sums up my predicament, objects once so treasured now reduced to symbols of the toll my disease has exacted.

Of course, my illness has led to fits of remorse, some of them quite intense, but it's also led me to fully grasp that the worth of a person lies not in the objects they possess, their outward grace and elegance, or their physical beauty or prowess. The true worth of a human being lies far, far deeper, in their essence, their spirit, their soul. Though this disease is a curse, it has led me to befriend some of the finest people I've ever known, people who likewise have been stripped of all the adornments and material goods too often used as armor and camouflage in the land of the healthy, people who have nothing to offer but the kindness of their hearts and the keenness of their minds. We may be unwilling aliens here on planet Earth, but in our shared state of otherness I've learned the values that make us truly human.

Still More Bits and Pieces

Image via Wikipedia

Here's yet another collection of MS related items and bits of news that I'd like to pass along to all who are interested. If you're not interested, please feign interest, as my feelings are very easily hurt.

For those expecting another of my essays filled with philosophical musings (mumbo-jumbo?) about life with chronic debilitating illness, no fears, more are on the way. I've got several ideas percolating in my brain pan, but they need just a little more seasoning. In other words, I've been too busy obsessing about my upcoming fantasy baseball league to write them down. I'm all in a tizzy because Chase Utley (the second baseman of the Philadelphia Phillies, as if you didn't know) is going to be starting the season on the disabled list. When will the horrors end?

Anyway, on with the show…

• Gilenya, the new oral MS drug recently approved by the FDA and the European drug regulatory agencies, is derived from a fungus called cordyceps that has been used in traditional Chinese medicine for over 5000 years. The spores of the fungus infiltrate the bodies of insects, turning them into zombies that look for sunny places to attach themselves, where they remain motionless while the fungus matures and finally bursts out of their bodies, eventually releasing more spores to continue the cycle in yet more insects.

  You can't make this stuff up, it sounds like the plot of a science-fiction movie…

  Watch this video, it's truly amazing…

• Last week the first annual meeting of the International Society for Neurovascular Disease was held in Bologna, Italy. On hand were many of the notable doctors and scientists researching CCSVI, and many intriguing presentations were given on a wide variety of subjects related to the "vascular theory of MS". Some of the most notable presentations included the results of a study using CT venography to try to detect venous abnormalities in healthy subjects (only 8% exhibited such abnormalities), a preliminary analysis of the effectiveness of CCSVI treatment on MS patients, the role of CNS hypoperfusion (decreased blood flow) in MS pathology, and the before and after results of venoplasty as seen on functional MRI imaging, among many others. (Click here) to see a list of all of the presentations given, along with links to abstracts of those presentations.

  There's enough here to keep CCSVI junkies busy with several hours of fascinating reading, and as there's nothing more important for a self-advocating MS patient than keeping abreast of the latest research news and information, reading through these abstracts is definitely time well spent.

• HSCT, a stem cell treatment in which a patient's immune system is completely destroyed through the use of chemotherapy drugs, and then "rebooted" by transplanting their own bone marrow derived stem cells back into the patient, has been shown to curtail disease progression, at least in some patients, over the course of a recently released 11 year study (click here). Patients with active inflammation fared best, with 44% of them showing no progression after an average of 11 years. Only 10% of patients without active inflammation (enhancing lesions) saw such success.

  On the downside, two patients (of the 35 study) died as a direct result of the immunoablative chemotherapy used in the regimen. However, in the decade plus since this study was started, the chemotherapy regimen used to ablate the immune system has been refined, and recent mortality figures are almost nil.

  In addition to a halt in progression, some of the patients did see their EDSS scores reduced for a time, but eventually regressed. After three, four, and five years the progression free rates of the treated patients were 80%, so it does appear that the effectiveness of the treatment diminishes with time.

  To my mind, these results raise a fair amount of questions, as they would seem to indicate that the underlying cause of MS is not dealt with even when the immune system is completely destroyed and then rebuilt from scratch. Whatever it is that causes MS, whether it be vascular abnormalities, smoldering viral or bacterial infections (such as EBV, chlamydia pneumonia, or HHV-6), environmental toxins, genetics, or, more likely, a combination of all of the above, is still at work, and eventually causes the immune system to go on the attack once again, at least in over half of the patients studied.

  Intriguing results, to say the least.

• Sativex, an anti-spasticity medication derived from the demon weed marijuana, has been approved in six more European countries, in addition to the UK and Spain, which had previously approved the drug (click here). Canada has also approved the use of Sativex (which is a spray used under the tongue) for spasticity, as it has been proven to be quite safe and effective in combating the painful and debilitating condition in MS patients.

  Spasticity results in stiffness of the muscles, and in extreme cases locks muscles frozen in position. The ailment is the result of muscles receiving nerve signals to contract, but not the signals to relax once again. It is a major cause of pain and disability in Multiple Sclerosis patients.

  Here in the United States, where the powers that be are wise and benevolent enough to protect hapless chronically ill patients from the decadent and debauching effects of any medicine that might be derived from the soul sucking marijuana plant, Sativex cannot even be tested, and instead we are left to take anti-spasticity drugs that in many cases leave patients in a state of extreme stupefaction.

  One such drug, Zanaflex, literally makes my eyes cross with exhaustion about 45 minutes after taking it, and if I'm not in bed about 5 minutes after the crossing of the eyes, I slip into a coma like slumber wherever I happen to be seated. I quite literally crashed forehead first into my computer keyboard when I once mistakenly tried to fight the effects of the medication and finish an e-mail I was working on. But at least my soul is intact, unlike all of those European and Canadian Multiple Sclerosis heathens soaking up the Sativex. Sure hope they have Sativex in hell, because that's where those tens of thousands of spasticity free Sativex hop heads are heading…

• Last, but certainly not least, I'd like to thank my brother, his main squeeze, my three-year-old nephew (their son), and my brother's main squeeze's brother and father, for participating in the Marathon de Ski SP (MS Ski Marathon) up in Montréal, Canada, to help raise funds to fight MS. With my unbearably cute nephew leading the charge, "Team Marc Stecker" won the day, completing about 65 runs down the mountain! My unbearably cute nephew even won a medal, which he was quite proud of. He probably would have been prouder if it was a Thomas the Tank Engine toy, but such are the tribulations of growing up. Incredible that my brother and the gang could accomplish such a feat, especially with all that Sativex stealing the souls of people left and right up there in Canada. Here are some pictures of the winning team…

Bits and Pieces: Back, Once Again

Image via Wikipedia

Here's yet another edition of Bits and Pieces, in which I assemble various MS related (and sometimes non-MS related) materials for your reading and/or viewing pleasure. These are all items which have piqued my interest for one reason or another, which I feel the compulsive need to share with my loyal (or even disloyal) readers. I hope these items pique your interest also, as having one's interests piqued can really be the peak of one's day.

I use voice recognition software to "write" these posts, so in actuality I speak to them, and for some reason I'm experiencing much merriment when speaking the word "piqued", in addition to the fact that I think it's pretty neat that the software is differentiating between piqued and peaked and peeked. Okay, so I had to help it out that with that last bit, but it's entertaining me nonetheless…

Anyway, let's get on with it. Here's a peek at what has piqued my interest over the last couple of weeks. To the right is a picture of a pique peek peak.

• CCSVI stuff: the International Society of Neurovascular Disease convened a meeting of some of the foremost CCSVI experts on March 14-15, in Bologna, Italy. Much important data was presented, including studies on the epidemiology of CCSVI and MS, the role of oxygenation and tissue drainage, the role of iron, advanced diagnostic imaging, the treatment of CCSVI, and development of animal models of CCSVI. Dr. Paolo Zamboni, who first put forth the CCSVI hypothesis, demonstrated new technology designed to improve the ease and accuracy of diagnosing CCSVI, in the form of a collar that can be placed on a patient's neck, which measures the difference in the volume of blood going through the jugular veins when measuring patients in an upright and then supine position. (Click here) for a summary of the conference findings, which will open up as a Word document. In my version of Word, the document opens up in a multipage format that makes it difficult to read. If you experience the same problem, simply go to the "view" menu and choose the "one page" option.

  From March 26-31, the Society of Interventional Radiology (SIR) will hold their annual meeting in Chicago, at which CCSVI will be a major topic of discussion. On the evening of Tuesday, March 29, the CCSVI Alliance will be holding a Doctor's Roundtable Discussion on CCSVI and MS, which will be open to the public. The panel includes a long list of some of the most notable names in CCSVI research and treatment, and the discussion, which will include questions from the audience, should be absolutely fascinating. Anyone in the Chicago area with an interest in CCSVI should make every effort to attend. (Click here) to register for this free event.

• Researchers at Purdue University have discovered that the decades-old hypertension drug Hydralazine may delay the onset and reduce the severity of MS symptoms (click here). The scientists theorize that the drug works by blocking the action of a toxic compound called acrolein, which is found in automobile exhaust and cigarette smoke. Coincidentally (?), a few years ago the anti-hypertension (high blood pressure) drug Lisinopril also showed promise in the fight against MS (click here). Might the action of these two drugs, both of which regulate blood pressure, play into the CCSVI hypothesis? Common sense would seem to indicate so, but common sense would also lead you to believe that both of these drugs, having long ago been proven safe, would at this very moment be undergoing exhaustive testing to ascertain just how effective they could be in treating the scourge of Multiple Sclerosis.

  Unfortunately, both drugs are so old that they are off patent, meaning that they are very cheap and available as generics. Thus, pharmaceutical companies can't make gazillions of dollars marketing them to MS patients. Since most of the medical research in this country is funded by Big Pharma, which only throws money at research that has the potential of turning a huge profit, these drugs have a snowball's chance in hell of being given more than a cursory glance as possible MS treatments. In regards to studies into Lisinopril, the lead researcher, Dr. Steinman, had this to say:

  "Who's going to pay for it?" he asked. A standard proof-of-concept study with about 200 patients would cost in the vicinity of $20 million. ACE inhibitors are as inexpensive as any prescription drug at this time, so pharmaceutical companies won't see any profits from financing a study, he said.

  The line to the vomitorium starts behind me.

• On a much happier note, many people don't realize it, but service dogs aren't only for the blind. These amazing pooches can be of considerable benefit to disabled MSers, as they can be trained to do a variety of tasks, including retrieving dropped items, turning on lights, pulling wheelchairs, preventing falls, and helping to combat depression. All that, and as part of the package you get a fuzzy best friend for life who will love you unconditionally. For more information, (click here).
• A new online magazine, Atrium (click here), is dedicated to helping shift the thinking of a new generation of doctors and healthcare practitioners in this emerging age of widespread access to information and Internet social networking. These two factors are changing the patient-doctor dynamic, which in turn should change the way that medicine is practiced. Started by two extremely motivated Yale medical students, Atrium features articles, insights, and opinions on a wide variety of subjects, including not only medicine but also art, music, and philosophy. The editors have decided to include some Wheelchair Kamikaze essays in the mix, and I'm honored to have been chosen to represent a patient's point of view. I'd urge everyone to check out this new online resource, skipping over my essays to read the wealth of other fascinating material Atrium has to offer.

• Readers of Wheelchair Kamikaze know of my fondness for photography, and I recently came across the story of Flo Fox, a photographer who was born partially blind and later developed Multiple Sclerosis, which robbed yet more of her vision as well as her mobility. In the 1970s, Flo Fox was a personality in the edgy downtown New York art scene, and had gallery and museum shows around the world. She rubbed elbows with Andy Warhol, appeared on late night talk shows, and was even featured on "Live, with Regis and Kathy Lee".

  By pure happenstance, Flo Fox appeared in a 2010 documentary about Joan Rivers, when Ms. Rivers delivered food to Fox's apartment while doing volunteer work for the group God's Love We Deliver. Now in her 60s, Fox lives in housing for the blind, but maintains her moxie and mischievous spirit. Looks like I'm only following in her wheel tracks, as it seems like Flo Fox was the original Wheelchair Kamikaze. (Click here and here) for more on the Flo Fox story, and feast your eyes on the videos below, one of which is a montage of her photos of 1970s New York City set to some very cool music, and the other a clip of her appearance with Regis and Kathy Lee, circa 1983.

What Does MS = To You?

March 14-20 is "MS Awareness Week", and the NMSS has sponsored a "MS =" program (click here), asking folks to describe what MS means to them in 60 characters or less.

Here's my go at it.

MS = WMD

· Weapon of Mass Destruction (of course).

· Watch Me Deteriorate.

· Withering Muscles Disobey.

· Waves of Money for Druggists.

· Way too Many Doctors.

· Waylaid by My Destiny.

· Waning Memory Disappears.

· Why Me, Dammit?

· Weight of Monstrous Desperation.

· Walking, My Desire.

· Wretched, Miserable Diagnosis.

· Wishing Makes no Difference.

· Waiting for More Disability.

· Wrecking My Dreams.

· Weakening More Daily.

· Wisdom of Mindful Defiance.

· Wanting More Defenses.

· Whip My Disease!

· White Matter Demolition.

· Where is My Deliverance?

· Welcome to the Minority of the Disabled.

· Willfulness Massacres Despair

· Wellness Merits Determination

Okay, that's a start. Let's make this an interactive activity. Please contribute your own "MS =" using words with the first letters W, M, and D in the comments section, and I'll add it to the list, with an attribution to your screen name. It will be like a regular Wheelchair Kamikaze funfest, except, you know, MS isn't really all that much fun…

· When Myelin Dies (submitted by Judy)

· Why My Dearest? (submitted by Debra, caregiver)

· i Want My Damn life back (submitted by Cutter)

· What, Me Disabled? (submitted by Corey, my brother)

· Winging My Diagnosis (submitted by YankeeQuilter)

· Will Make Do (submitted by Team)

· Wishing Makes Despair (submitted by Dabble and the Mad Sow)

· Wanting More, Dammit (submitted by Dabble and the Mad Sow)

· Waiting for More Direction (submitted by Kim)

· Wishing Me was Desirable (submitted by Kim)

· Waning Muscles Decrease (submitted by Kim)

· Walking Made Difficult (submitted by Nicole)

· Wife, Mother Destroyed (submitted by Tam D)

· Why MS Discrimination?-in regards to CCSVI (submitted by Carol)

· Watch Me Deteriorate (submitted by Roberta)

· While Men Debate (submitted by Roberta)

· Why Me, Dieu? (submitted by Roberta)

· Will Medicine Deliver? (submitted by Roberta)

· Will Miracles Develop? (submitted by Roberta)

· Watch… Muse… Dream (submitted by Roberta)

· Watching Michael Dake-noted CCSVI researcher (submitted by Anonymous)

· Who, Me Doomed? (submitted by Scott)

· Where's My Dexterity? (submitted by Scott)

· What's My Destiny? (submitted by Scott)

· What, Me Depressed? (submitted by Scott)

· When My Dog helps (submitted by MSbeyondmeds)

· What a Miserable Disease (submitted by Gina)

· Why Me, Dear God? (submitted by Heidi)

· Watch Me Decline (submitted by Heidi)

· Why I Mess up Daily (submitted by Heidi)

· When Muscles Degenerate (submitted by Heidi)

· Will be My Day (submitted by Jamie)

· Whipping My Diagnosis (submitted by Jamie)

· Whispering Medical Dungeon (submitted by Jamie)

· Winning May be Differential thinking (submitted by Jamie)

· Will Master my Disease (submitted by Jamie)

· Waxing My Dependence (submitted by Carolyn)

· Wise Mind Developing (submitted by LauraX)

· Women <, Men >, Disability + (submitted by Cindy)

· Whip My Derrière (submitted by Tricia's husband husband)

· Withering More Daily (submitted by Tricia)

· What's My Disease? (submitted by Pasopati)

· Watch My Doom (submitted by Pasopati)

· Wrong Motherfucking Diagnosis (submitted by Pasopati)

· Write off My Doctor (submitted by Pasopati)

· Want More Drugs (submitted by Pasopati)

· When Myself Died (submitted by Swamp Granny)

· Word Melt Down (submitted by Swamp Granny)

· Worthless Mindless Dialogue (submitted by Swamp Granny)

· Whole Mind Damage (submitted by Swamp Granny)

· Worthless Mind Dump (submitted by Swamp Granny)

· Worthless Mind Demeanor (submitted by Swamp Granny)

· Whole Mind Disaster (submitted by Swamp Granny)

· Wholey Myself Damned (submitted by Swamp Granny)

· Whole Mind Defeat (submitted by Swamp Granny)

· What Me Dunno (submitted by Swamp Granny)

· Whoa, MS Darlin' (submitted by Webster)

· Where's My Deliverance? (submitted by Tuna)

· Willful Malingering Denial (submitted by Pasopati)

· Well, Modify D'Plan (submitted by Barry)

· Whittling away My Dreams (submitted by Patti)

· When Me Disappears (submitted by Ms Andisue)

· What will My family Do (submitted by Anonymous)

· Waiting for My Defeat (submitted by Anonymous)

· Watch My Doddering (submitted by Anonymous)

· Wicked Muscle Disease! (submitted by Sparkysmom)

· Watch. Me. Do (this). (submitted by rossandconnierockon)

· Worrying about My Dad (submitted by Becky)

· Wondering with My Dad (submitted by Becky)

· Walking for My Dad (submitted by Becky)

· Will MS Disappear? (submitted by Becky)

· Wandering Motionlessly Devoid (submitted by Anonymous)

· Wasting My Dreams (submitted by Anonymous)

· Worrying about My Dad (submitted by Becky)

· Watch My Defiance (submitted by Sandy)

· Withering My Dialogue (submitted by Maria)

· Wretched Mortifying Demon (submitted by bestadmom)

· With Many Defects (still loving life) (submitted by Anonymous)

· Why My Daughter, too? (submitted by Sharon)

· Weirdly Malfunctioning Defense (submitted by Barb)

· Wits Mostly Devoured (submitted by Barb)

· Wellness Made Discomfiture (submitted by Barb)

· Woman's Moxie Devastated (submitted by Barb)

· What Monstrous Drivel (submitted by Barb)

· Wretched Maniacal Devil (submitted by Lisa)

· Worst Motherfucking Disease (submitted by Lisa)

· Weird Morbid Descent (submitted by Lisa)

· Witness My Devolution (submitted by Lisa)

· What? My Demotion! (submitted by mscellenea)

· Waiting on My Deliverer! (submitted by Kimmy)

· Woe to Many Doubters… (submitted by Kimmy)

· Wasting My Days! (submitted by Kimmy)

· Weakening My Demeanor. (submitted by Kimmy)

· Wanting My Dad! (submitted by Kimmy)

· Warrior of Much Damage! (submitted by Kimmy)

Deconstructing Marc

Image via Wikipedia

Multiple Sclerosis is an undeniably destructive force. To various degrees, which change from patient to patient, the disease picks apart bodies, careers, and relationships, intent on scrambling the numberless pieces that make up the jigsaw puzzle that is each human being it touches. As the malady disrupts a patient's physical body, it also forces those afflicted with it to deconstruct themselves emotionally, spiritually, and philosophically as they adjust to the changes wrought by MS. But this deconstruction also forces the patient into a reconstruction, as they gradually shed the self-identifications and the societal expectations that had formally defined who they were, and replace them with a new sense of self that conforms to the ever-changing reality of living with a chronic, progressively disabling illness.

The speed with which this process occurs varies dramatically from individual to individual, as the mutable nature of MS means that no two patients experience in the disease in quite the same way. Some can live with the sickness for decades and suffer relatively few setbacks because of it. For these folks, the changes within may be as subtle as the disease itself, barely visible on a day-to-day basis, but more apparent when looked back at from year to year or decade to decade. Other patients, like myself, are hit hard by a more aggressive form of the illness, and adjusting to the physical and mental challenges it imposes requires almost daily manipulations of the mind and body. MS demands a metamorphosis, not only from physically able to physically disabled, but from who we were to who we are becoming.

Every person, sick or well, goes through fundamental changes over the course of a lifetime, molded by mounting age and experience. Chronic disabling disease acts as a multiplier for this universal experience, compressing the time span and focusing the intensity of adjustment. The eight years since my diagnosis have seen me undergo changes of seismic proportion, as the landscape of my inner and outer lives have been rocked to a degree I hardly thought possible. Just as residents knowingly living in an earthquake zone are nevertheless shocked when the ground shifts and buildings tumble, people shaken by serious illness are stunned by their being hit with adversity, although we are all aware, even if in the most abstract sense, that accidents, illness, and misfortune are tripwires strung haphazardly across the road of life. Multiple Sclerosis is the kind of horror that happens to other people, we think, not to us. It's a comforting delusion.

After absorbing the initial shock of my diagnosis, for a while life proceeded on almost as if everything were normal. My internal dialogue was changing, as questions about my new disease and the impact it would have on my future were always being sifted, sometimes consciously, sometimes tucked away in the mind's recesses. Initially, my daily routine hardly changed, just as most of those aboard the Titanic, having registered the initial shudder of the ship hitting the iceberg, drank their aperitifs and danced their waltzes, for a few minutes anyway. I got up every day, kissed my wife, showered and dressed, walked the dog, and went to work. There were the usual dinners out, shopping on weekends, socializing with friends. Yes, there was an injection to give myself every few days, but even that held the promise of a sustained normalcy and helped maintain the illusion of control. Soon though, the ship started taking on water; the slight limp in my right leg got worse, and my right arm became progressively weaker. The descent had begun.

Just as my physical disabilities all too soon demanded attention (an ankle brace, a cane), my sense of self screamed out for contemplation. What had sometimes been a swagger now became a foot dragging limp, the dearly held illusion of immortality replaced by the reality that I was now physically defective and was very likely only going to become more so. I wore a brave face, proud of the fact that my performance at work didn't falter, even as my body did. My well practiced neurotic antics suddenly didn't seem so endearing, and the worries and anxieties that had once consumed me were now rendered trivial, as if a Woody Allen character were dropped into a concentration camp.

This was a new and frightening world I was abruptly required to navigate, filled with its own jargon and customs, a foreign realm of doctor’s appointments, medical procedures, and ever-increasing physical weakness, a place of changed priorities and heartfelt losses, a domain that imposed humility and was best traversed with a keen sense of the absurd. Thrust into this Twilight Zone, I was a character in search of a script, learning my lines on the fly, the psychological and philosophical square pegs that had conformed neatly into the cutouts of my former self now being forced to fit into round holes, requiring them to either be whittled into shape or simply discarded. This disease of the body was also a crisis of the soul, but through the churning turmoil I started to glimpse flickers of clarity, faint at first but soon better defined.

A key moment came when, less than four years after my diagnosis, the disease forced me to go on disability and "retire". Although this cleaving from the working world was jarring and disorienting, it didn't seem as hard for me as it does for some others I've known who've endured a medically forced retirement. Despite the fact that I had achieved a respectable level of success in a highly competitive business, I'd never felt entirely comfortable in the roles I played during my career. I always liked telling people what I did ( TV, video, and DVD production) more than I liked actually doing it, and there were long stretches of my working life during which I felt I had strayed entirely off of my path, though I wasn't sure what that path might be.

I'd always had literary and creative aspirations, and the everyday grind of life working within a corporate organization, even one dedicated to creative endeavors, was at best an ill fit. As a youth I'd sworn that I would never get drawn into the workaday world, but like so many who make such declarations, circumstances dictated otherwise. Now, although the details certainly were less than ideal, I found myself free, somehow liberated in spirit by the very thing I dreaded most, the insidiously increasing physical disability that was imprisoning my body.

In a case of addition by subtraction, in being forced to let go of the old me I was able to discover the person that lurked within, the person who I might yet be, long buried under years of socialization, expectation, responsibility, and requirement. Like a chef preparing a reduction, intensifying the flavor of a liquid by boiling off its excess, I found that the forced process of peeling back the layers of the person I had become allowed me to find within a truer self, the me that had fed the simmering yearning I'd felt for most of my adult life.

Somehow, Multiple Sclerosis (or whatever I have-click here) thrust me, quite violently, onto a path I'd long given up for lost. I often wonder whether or not I would have still been stricken by MS if I'd had the guts and fortitude to find or fight my own way back onto my path, or if the disease was a hammer blow delivered by a universe intent on getting me back on track. Either way, though I despise the disease and the physical toll it continues to take, I like the person I've become much more than the person I was not so long ago.

It would be nice if the disease would relent long enough for me to fully explore and enjoy this new old road, but over that I have little governance. I can advocate for and educate myself, but the actual healing is out of my hands. The only control I do have is to take the journey moment by moment, focusing on the good contained within each passing now, and accepting the bad as a particularly unpleasant traveling companion. With each day there is night, with each peak there is valley, for every gain there must be loss. Such is the way of nature; such is the way of life…

Link to Blogtalk Radio Show on CCSVI

This past Monday night, I appeared on the Blogtalk Radio Internet program "CCSVI-Been There, Done That". The show featured a range of guests relating their different experiences with the CCSVI treatment procedure. The patients profiled represent a cross-section of the possible outcomes of CCSVI venoplasty, including some who saw tremendous benefit from the procedure, some who saw benefit but then restenosed, and others who saw no benefit at all. It avoids the controversy surrounding the CCSVI hypothesis itself, and puts a very human face on MS and the promise of CCSVI.

Hosted by the gracious and ever genial Amy Gurowitz, the program provides valuable patient perspectives from some who have undergone the CCSVI treatment procedure. I might be a little bit biased, as I was one of the guests, but I honestly think the program is an important listen for anyone considering CCSVI treatment. Please click the play arrow on the handy dandy interface below to listen to the show…

Edited to add: I've been getting word that some people are having trouble with the Blogtalk Radio interface, above. It works fine on my browser, but sometimes these things can be finicky. Be advised that the first minute and thirty seconds or so of the program are a commercial and then some introductory music. To play the program, you have to click on the white arrow symbol on the left side of the interface.

If the interface continues to malfunction, you can access the program directly from the Blogtalk Radio website (click here). Once on the website, scroll down until you get to the "CCSVI-Been There, Done That" section, at the bottom of which you'll find clickable buttons to play the program, along with some other options.

Sorry for the inconvenience, hopefully everyone who wants to listen to the program will be able to by either using the above gizmo, or going directly to the Blogtalk Radio website. Thanks.

Monday, March 7, 8 PM EST - CCSVI on Blog Talk Radio

Image via CrunchBase

I'll be joining host Amy Gurowitz and five other MSers who have undergone the CCSVI treatment procedure for a two-hour netcast of her show "MS-LOL: Multiple Sclerosis-A Life Of Learning", discussing our experiences and swapping information on the topic, this Monday, March 7, at 8 PM EST. (click here for Blog Talk Radio page). Listeners will be encouraged to call in and ask questions, so you can participate in the show. All the necessary info is included on the website linked to above.

Amy Gurowitz is an MS patient herself, and heads up the Internet-based MS education nonprofit "MS Soft Serve" (click here). In addition, Amy maintains a blog, (click here) which details her monthly radio show and also includes her take on living life with MS.

I've recently been working with Amy on a couple of MS advocacy related projects, and she's a super intelligent, very compassionate, and genuinely nice human being. I'm excited about my invitation to participate in her show, and hope WK readers won't be shy about calling in with their CCSVI related questions.

Speak to you Monday…

To see a list converting the time of the show to your local time, please (click here)

CCSVI: Trying to Take the "Hyper" out of “Hyperbole"

Image by soukup via Flickr

Over the last several months, many of the Internet MS forums, chat rooms, and social networking sites have become places of sometimes heated conflict, in large part due to the extremes of emotion brought about by the topic of CCSVI. In general, open debate is a good thing, as it allows for the formation and refining of informed opinion, but in some cases, on both sides of the argument, I've seen statements presented as fact which simply aren't so, and an escalation of rhetoric that rather than adding clarity to the issue begins to obscure it.

Given the potentially dreadful outcomes of Multiple Sclerosis, and the raw emotion that such prospects engender in those that suffer from the disease, it's not surprising that disagreements can often become heated. As regular readers of this blog know, I believe there is much merit to the CCSVI hypothesis, but I'm also cognizant of the fact that the theory is likely not THE one and only answer for the majority of MS patients. For a select few it may be, but for most it is likely a piece of a very complex puzzle; just how large a piece has yet to be determined. Here then, are some of the more commonly seen hyperbolic statements made about the CCSVI and its ancillary topics, and an attempt at taking a reasoned approach to them.

"CCSVI cures MS/CCSVI is a hoax" - these are two sides of the same coin, the utopian/dystopian opinions on the subject. Let's take a look at the negative statement first, as it borders on the truly ludicrous.

When the CCSVI hypothesis first surfaced in the mainstream MS community, roughly 18 months ago, several prominent neurologists and representatives of the MS societies went on record stating that the theory had no validity whatsoever, and that patients were foolish to be wasting their time, emotion, and money pursuing the issue. These statements were made, I suppose, based on an instinctive defense of territory, and a very rigid adherence to traditional MS dogma which states that MS is an autoimmune disease confined to central nervous system, caused by an immune system that, for reasons unknown, has taken to attacking a patient's own cells. Unfortunately, this autoimmune model of the disease, which has held sway for over two decades, has done little to advance the cause of curing MS. It has, though, led to the production of a family of high-priced drugs that modulate or suppress the immune system which do increase the quality of life for a percentage of the patients taking them, but do absolutely nothing by way of offering a cure.

One would think that MS neurologists, as scientists devoted to unraveling one of the most cryptic of medical puzzles, would have their interests piqued by such an outside the box take on the disease. Instead most turned their noses up to it as if it were a lump of feces served on a dinner plate. I can find no logical defense for this stance, as, with the best interests of their patients in mind, the MS establishment should have urged effective trials of the CCSVI hypothesis to be undertaken with great haste, to either prove or disprove CCSVI as quickly as possible. If proven right, the doubters could have quickly put a stake in the heart of CCSVI and moved on; if proven wrong, they would have ample reason to reassess their position and let the revolution begin. Either way, although the majority of evidence in favor of the hypothesis was and still is mostly anecdotal, the promise of a safe and effective new treatment and the potential of an entirely new way of looking at MS, developed by a reputable physician, should deserve serious scientific consideration.

On the flipside, some of the most fervent CCSVI advocates portray the hypothesis as a breakthrough cure for MS, a viewpoint that, while possible, simply isn't supported by the weight of the currently available evidence. A growing body of anecdotal reports certainly indicates that clearing blockages in the CNS associated veins of some MS patients provides relief of symptoms, but the degree of relief varies widely from patient to patient, and a signifiant number of patients experiences no relief whatsoever.

Although this lack of effectiveness of CCSVI treatment in some patients is of course disappointing, it really shouldn't be surprising, as we do know that MS presents itself very differently from patient to patient, and gets increasingly more difficult to treat the longer the duration of the disease. Different subpopulations of patients almost certainly have different disease triggers, and there's the distinct possibility that what we call Multiple Sclerosis isn't really one disease at all, but rather a collection of similar diseases that share symptomatic and diagnostic profiles. Vascular issues may play a large part in the disease of some patients, but a much smaller role, or no role at all, in the disease of others. There is still much to learn about CCSVI, and we don't yet even know the prevalence of the venous abnormalities collectively known as CCSVI in the healthy population. Stating anything about CCSVI, pro or con, with unequivocal certainty only sets one up to be proven wrong.

"MS is a vascular disease! Neurologists should step aside!" - It's easy to understand the frustration that many patients have with their neurologist, and neurology in general, over the CCSVI issue. Though one wouldn't expect neurologists en masse to wholly embrace the theory, the ham-fisted stonewalling experienced by many patients at the hands of their doctors has quite understandably left many angry and disgusted. Still, even in a best case scenario in which CCSVI proves to be a major key to unlocking the MS puzzle, neurologists would continue to have a major role in treating the disease. In such a rosy scenario, two possibilities present themselves: MS is a vascular disease with neurologic implications, or it is a neurologic disease with vascular implications. In either case, neurologists would remain a significant part of the picture.

Many of the interventional radiologists (the physicians who perform the CCSVI treatment) I've talked to describe themselves as medical plumbers. Their specialty is unblocking and fixing defective veins and arteries. They readily admit to having little or no knowledge of the neurologic implications of the venous abnormalities they're encountering in MS patients, they are simply attempting to fix what they see as broken vasculature and disrupted blood flow. Time and time again, the IRs doing CCSVI treatment have called on neurologists to join them in an interdisciplinary investigation of the hypothesis, for the very reason that the expertise possessed by neurologists is necessary to unravel all of the questions surrounding CCSVI.

As noted above, many MS patients are proving to be non-responders to CCSVI treatment. Their stories aren't heard much on MS forums or Facebook pages, and very few are making YouTube videos saying, "Look at me, I'm a CCSVI loser", but there are many MSers who have undergone venoplasty and experienced little or no benefit. I receive a steady stream of e-mails from some of these patients, perhaps because I too underwent the procedure but didn't experienced benefit (not that this has soured me on trying again, as I consider my procedure a "successful failure" (click here), and I expect to give it another go within the next few months).

Certainly, for patients who don't respond to CCSVI, neurologists will continue to play the primary role in treating their disease. Even in the case of CCSVI "hyper responders", in whom the treatment procedure works wonders, neurologists will be responsible for monitoring and treating the residual neurologic damage that will almost inevitably remain even if their disease has been eliminated. Unless caught in its earliest stages, MS does damage to nerve cells, which have little capacity for healing. Once damaged beyond a certain point, cells in the CNS do not regenerate, which is why those who suffer brain or spinal cord damage due to accidents or stroke rarely recover all of their lost abilities. MS patients with significant long-term mobility and/or cognitive issues would be left with serious neurologic deficits even if the MS disease process could be completely stopped by addressing their vascular issues. The advancing science of neuroprotective and neuroregenerative medicine falls squarely in the province of neurology. Therefore, like it or not, neurologists will remain a prominent part of the MS picture, regardless of the eventual success or failure of CCSVI.

"All trials done by researchers with connections to pharmaceutical companies should be disregarded" -On its face, this statement would seem to make sense due to the perceived conflict of interest of the researchers involved, and it's become the rallying cry against all published research with negative implications for CCSVI. The typical reaction sequence goes something like this: someone will post news of a research report critical of CCSVI on an MS forum, and within minutes other posters will report on the pharmaceutical company ties the researchers behind the report inevitably have. Case closed, the researchers were biased, and the trial results should be relegated to the trash heap.

The unfortunate truth, though, is that if all medical research done by investigators with ties to Big Pharma were to be disregarded, there would be practically no medical research left to ponder. The tragically dysfunctional medical research model that has evolved in the past several decades relies on Big Pharma to fund the vast majority of medical research trials. Furthermore, the tentacles of Big Pharma reach far and wide, their suckers touching almost all researchers and research facilities. The only entities completely untainted by pharmaceutical moneys are government and some academic facilities, both of which are woefully underfunded given our deficit laden government and the economic limitations of privately funded academia.

Given such a research milieu, it's almost impossible to find late stage medical research that is free from the taint of pharmaceutical financing. Almost all prominent researchers will have at some point in the careers been associated with pharmaceutical or medical device companies. This includes the heroes of CCSVI, the interventional radiologists. Just as there is stiff competition among pharmaceutical companies to woo neurologists to prescribe their immensely profitable drugs, medical device companies compete to get physicians to use their catheters, angioplasty balloons, and stents. Such are the realities of a medical industrial complex that feeds on the plight of patients. Let's not forget, too, that there is potentially a tremendous amount of money to be made treating CCSVI. The profit motive cuts both ways. We are already seeing the beginnings of aggressive marketing campaigns being conducted by CCSVI clinics in competition for patients, a development that will likely only increase as time goes on.

"Throw out your MS drugs; they're all snake oil and poison" - I'm no fan of Big Pharma and many of the products they produce. As for-profit public corporations, the big pharmaceutical companies are legally mandated to be beholden to their shareholders, not to the patients who take their products. Thus, the primary goal of any pharmaceutical company CEO is to increase their company's bottom line, a goal that is often at odds with that of finding cures, the development of which would effectively eliminate the consumer base of the company’s products. Multiple Sclerosis is now an $8 billion a year industry, and MS patients on disease modifying drugs have become indentured servants to the companies that produce MS medications.

That said, the current crop of MS drugs do increase the quality of life for a significant percentage of the patients taking them. No, they do not cure the disease. It is uncertain as to whether or not they even slow the progression of disease, as research can be found to support both sides of this issue (for "con" click here, for "pro" click here, here, and here). They do, however, cut down on the relapse rates of patients with relapsing remitting disease, in some cases to a dramatic degree. Since MS relapses can leave a patient incapacitated or days, weeks, or months, relief from them is no small achievement. This benefit does come at a potential price, as all of the MS drugs carry with them a wide range of side effects, and it seems the more effective a drug is, the more horrendous its potential side effect profile becomes. Still, many patients refuse to come off of these drugs despite the risk involved, due solely to the vast improvement they've seen in their quality of life as the result of having taken them.

Twenty years ago, MS was a "diagnose and adios" disease, one which physicians had almost no weapons to combat. For patients with RRMS, that picture has changed dramatically, even if the drugs now available are flawed, some deeply so. Progressive patients still have very little in the way of effective therapies, and their treatment options remained primarily those of basic symptom management.

MS is a terrible disease, a hateful and frightening thing that those who suffer from it, and those who love them, universally detest. My fondest desire is to see CCSVI fulfill its potential. But raising the bar to impossible heights, or making well-intentioned but reckless statements may only serve to impede the progress of CCSVI advocacy. Hope is a wonderful and vital commodity, but in matters so precious, it must be tempered by reason.

____________________________________________________________________________________

I've recently been working, along with several other MS bloggers, with a healthcare advocacy website called WEGO Health (click here). WEGO Health is conducting a study on people’s use of new technologies for health and they need your voice to understand the potential of technology to empower patients.

The survey will take about 10 minutes (you can stop anytime & come back later). All completed survey responses will be entered into a drawing to win an iPad, one of three iPod Touches or one of 200 iTunes gift cards. Everyone will receive a report on our survey findings.

This survey is only open until Friday, March 4, so if you'd like to help, please do so soon.

To take WEGO Health’s Health Technology Survey (click here)