Tuesday, July 31, 2012

Gimme Some Truth


Truth (Photo credit: Wikipedia)
A few minutes before midnight two Fridays ago, most people would've considered my situation (partially and increasingly paralyzed due to MS) much worse than those of a large group of people who were settling in for a midnight movie in a theater in Colorado. Just a few minutes later, though, my circumstances were suddenly preferable to that of many of those same moviegoers, victims of the latest tragic spasm of mass murder to tear through the increasingly stressed fabric of American society.

The unsettling facts of this abrupt turnaround in fortunes underscore much of what I've previously written about in this space, the fragility and capriciousness of life, the delicate nature of the foundations of day-to-day existence, and the importance of consciously appreciating our allotment of each bit of that most precious of all commodities, time. Despite the unquestionable struggle of daily life with a progressive debilitating illness, for all but the most afflicted things could get worse, much worse, and in less time than it took you to read these words.

Soon after the initial shock and anguish provoked by the tragedy in Aurora, the nation as a whole turned to a question so familiar to sufferers who have experienced the devastating diagnosis of a serious illness, why? Pundits and experts pontificated about all of the usual suspects; lax gun laws, the unstable mental state of the shooter, the widespread violence that has somehow become a hallmark of American culture. Of course, none of these answers satisfies, just as an MS patient's search for reasons can never truly be fulfilled, or sense be made of the fate that has befallen them. Are we victims of genetics, some insidious environmental infectious agent or toxin, retribution for some past so-called sin or indiscretion, or simply bad luck? And once the disease strikes or the bullets fly, does the "why" really even matter?

Of course it does. If MS is ever to be cured, the "why" of the disease must be positively identified and solved. If the United States of America is ever to get past these last several decades of spasmodic violence, during which it has experience a devastating relapsing remitting pattern of mass murder, the reasons behind these outbursts must be understood. The ever-growing list of horrifically violent incidents is instantly recognizable to most Americans, a gruesome litany that includes the Richard Speck murders, Oklahoma City, Columbine, Virginia Tech, Gabby Giffords, and now Aurora. Sadly, I've left out far too many other such episodes, sudden eruptions of slaughter that rivet the attention of the nation for a week or two, but once the dead are buried and the news cycle rolls on the questions stop being asked, and we retreat once again into a paper-thin shell of willful ignorance. Just as patients with relapsing remitting multiple sclerosis suffer temporarily crippling flare-ups of their disease and then revert to something approximating normal, constantly living in dread of the next attack, we as a nation suffer through these periodic attacks of butchery, captivated for a few moments but then returning to what qualifies for normal, albeit with a resigned certainty that in some 12 or 18 months another madman will open fire on another group of innocents.

The problem is that the answers to both MS and this new American tradition of random massacre (yes, these things do happen in other countries, but not nearly with the shocking regularity as here in The States) are tremendously complex, neither lending themselves to quick answers or easy solutions. The crucial first step in unraveling these complexities is understanding the truths behind both maladies, truths that require not only expertise in the medical and social sciences, but a lifting of the veil behind which the machinations of the medical and social establishments operate. In the case of MS, the quest for a cure is blunted by a system of medical research that has grown into a dysfunctional cash fueled behemoth, and the key to putting an end to the phenomenon of mass murder is not attempting to understand the motivations of each individual killer, but coming to an understanding of what it is about modern American popular culture that churns out these self-appointed executioners with such frightening consistency.

I don't pretend to have the answers to either the predicament, but I do have my opinions. The field of medical research has come to be dominated by the big pharmaceutical companies, who fund an ever-increasing amount – well over 70% – of the research done in this country. This was not always the case, as just a few decades ago most medical research was done in academic laboratories, relatively free from the influences of the marketplace. Now, research is funded by the very companies that stand to profit from that research, a situation that screams "conflict of interest". Studies of new drugs are funded by the makers of those drugs, and the results of those studies are published in journals that are often heavily influenced of these same companies, in ways obvious and not. Research on therapies or compounds that stand little chance of turning major profit is either never initiated or left to die on the vine. The doctors who dispense the medications produced by this system, while not blameless themselves, often must rely on this very same research when coming to treatment decisions.

Though it's easy to paint Big Pharma as a monolithic evil entity, the truth is that these corporations are only doing what public companies are mandated to do, constantly increase their bottom line. The job of pharmaceutical company CEOs is not to bring to market new drugs that would be of the most benefit to the patients taking them, but to constantly increase their company's profits to satisfy the perpetual drive for endlessly increasing stock prices. The problem lies not in the malevolent intent of those who are the gears and fuel of the modern medicine machine, but rather in the construct of the machine itself. Our system of medical research has evolved into a terrific engine for driving profit, but a terrible mechanism for actually encouraging the visionary, groundbreaking research required to find novel new treatments and even cures.

Likewise, popular American culture plays a role in influencing those whose sense of alienation, disenfranchisement, and frustration boils to the point of bursting, resulting in desperate acts of hateful self-expression that too often take the form of the massacres that now scar the American cultural landscape. Yes, the culprits are undoubtedly mentally ill, but their mental disturbances can be magnified to the breaking point by a pop culture that celebrates narcissism, bad behavior, and fame for fames sake, while fostering absurdly improbable fantasies of privileged lives and endless bounty.

We are constantly bombarded, in words and pictures, by messages whose intent is to make us feel discontented and somehow lacking. The ultimate goal of advertising, after all, is to create a sense of longing in those at whom the messages are targeted. Our lives could be as happy, exciting, and glamorous as the people on TV if only we buy the right beer or car or antiperspirant or clothing. But what happens to those loosely tethered souls on the fringes of society who follow these leads but find their lives as frustrating and meaningless as ever? Loneliness cannot be conquered by purchasing the latest and greatest chewing gum, and dysfunctional social skills cannot be fixed by driving the shiniest new Chevrolet. An urgently growing sense of estrangement and feelings of inadequacy cannot be eased by a constant celebration of the gilded few, with peaks inside "celebrity cribs" and lifestyles of the rich and famous, so out of the reach of the average American that those leading such rarified lifestyles may as well exist on another planet.

Popular culture has lately taken to bestowing fame on those who in the past would not only have been ignored, but quite likely denigrated for their poor behavior. Television has become dominated by reality shows depicting a warped, cartoonish world in which boorishness, selfishness, and outrageous self-aggrandizement is encouraged, bestowing celebrity on those that aren't merely completely devoid of talent, but quite often of any redeeming qualities whatsoever. Just as MS patients are cajoled into believing in drugs whose mechanism of action cannot even be explained by those who manufacture them, popular culture pours forth a noxious pablum of false promises that is the modern equivalent of bread and circuses.

Films have largely replaced character development and the art of acting with mono dimensional heroes and computer-generated stylized violence (the shooting in Aurora erupted as an on-screen shootout was being played out), and professional sports now put up with prima donnas whose only allegiance is not to their team or fans but to themselves and the almighty dollar. When I was growing up, if a football player did a dance after making a routine catch or tackle, his ass would have been relegated to the bench regardless of the magnitude of his athletic prowess, and a baseball slugger who flipped his bat and took the time to admire his own home run could be sure that his next at-bat would feature a fastball thrown directly at his ear hole. Today, such shenanigans are not only tolerated but celebrated, the perpetrators showered in adulation and fantastic riches. It's cool to be a jackass.

The emergence of the Internet and social networking, for all of their potential positives, including the ability of MS patients to network and gain power through knowledge, have also given rise to cyber bullying, and for those not part of the flash mob an increased sense of isolation and alienation. Facebook has given everyone the chance to trumpet their every thought and action, no matter how routine or uninspired, and to amass hundreds of "friends" with whom they've actually made little or no actual human contact, potentially diminishing the very meaning of true friendship. The Internet provides access not only to vast resources that had previously been the exclusive province of a chosen few experts, but also, for those so inclined, information and imagery that can make seem acceptable what most would consider depraved, and an avenue for securing the knowledge and materials to make real wicked or violent fantasies. Alone in front of their computer screens, troubled individuals can give full rein to the darkness within, nurturing it to the point where it can stay within no longer. Awash in seething anger and enraged by the frustration of not gaining the attention to which so many now seem to think they are entitled, the borderline personality can concoct and bring to fruition a chilling plan that will at once exorcise their anger and gain them the attention they feel has been unfairly denied them.

The politics and governance of our nation has likewise suffered a hard turn towards the ugly and dysfunctional, a creeping degradation akin to the civic equivalent of progressive MS, inexorably crippling the body politic even as we look on with increasing concern. Opposing viewpoints are vilified, and those espousing them seen as enemies, rather than fellow countrymen with a different opinion. Compromise is seen as weakness, even as the nation's problems fester and threaten the well-being of our great experiment in democracy. Ideologies have become chiseled in stone, leaving no room for negotiation and problem solving, so instead a citizenry hungry for answers gets posturing instead of solutions.

The truth is that the bumper sticker ideologies of the right or the left can no more easily solve our complex political problems than chanting "I Have MS but MS Doesn't Have Me" can cure the horrors of multiple sclerosis. Our political leaders are themselves bought and paid for by special interests that will countenance no deviation from the party line, prisoners to a political system held hostage by the need to constantly fund raise in a never-ending election cycle. None dare speak of the actions that are desperately needed, to tell the public that yes, taxes must be raised and entitlement programs must be cut, that we must tend to our own problems before attempting to solve the world's, and that the corrosive influence of big money politics must somehow be curbed, as the current state of affairs is untenable even in the short run. Doing this would take courage and true leadership, attributes that those in positions of power, and those who aspire to them, seem incapable of mustering. Left with little or no inspiration, the populace is left adrift, watching helplessly as a great nation is devoured from within, just as the MS patient watches their once strong body slowly failing. For those already feeling desperate, the constant political rancor and its attendant paralysis can only stir the fetid mental miasma that eventually leads to an unquenchable appetite for destruction.

This lack of courage and leadership coupled with a popular culture that puts little emphasis on integrity and elevates the crass is evidenced in both the deficiencies of modern medical research and the seemingly unresolvable problem of the periodic episodes of mass murder that are a malignancy blighting the entire nation. We need to hear the truth about a medical system gone off the rails as well as political and cultural realities that have warped well beyond what would have been recognizable only a few generations ago. As patients and as a nation our needs are many, but none is more important than a large dose of the truth.

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Thursday, July 19, 2012

Adventures Outside the Box: Attempting a Naturopathic Treatment

Dioscorides’ Materia Medica, c. 1334 copy in A...

Dioscorides’ Materia Medica, c. 1334 copy in Arabic, describes medicinal features of cumin and dill. (Photo credit: Wikipedia)

Since my disease has proven to be extremely difficult to treat (I've always been something of a problem child), I'm quite open to new ideas about possible therapeutic options, as long as they make some scientific sense and don't present too much downside. I recently came across a research study (sent to me by a fellow MSer) that led me to investigate and then start a naturopathic program of medicinal herbal supplements, under the guidance of the terrific naturopathic doctor that is part of the team at my neurologist's clinic, the International Multiple Sclerosis Management Practice here in NYC (click here). Before I get into the details of this treatment regimen, please allow me to first provide a little background.

One of the most intriguing MS drugs now in the approval pipeline is BG-12, an oral drug that has been shown to be quite effective throughout a series of rigorous clinical trials (click here). Developed by biotech company Biogen, makers of Tysabri and Avonex, BG-12 differs from all other approved MS disease modifying drugs in that it does not directly suppress or modulate the immune system, mechanisms of action which are the reason why so many of the current drugs have daunting side effect profiles. Rather, BG-12 works by stimulating the body to produce enzymes that are strong anti-inflammatories and very effective antioxidants, thereby presumably protecting the body against the debilitating effects of oxidative stress, a biologic process that can lead to the damage and death of cells in the central nervous system (as well as other tissues throughout the human body).

BG-12 is a derivative of a natural product (it's an ester of fumeric acid, which is found in some mushrooms, lichen, and moss) that has been used generically in Germany for years to successfully treat psoriasis. I'm not sure how Biogen was able to patent this molecule and make it into what I presume will be a tremendously expensive drug, but we saw the same thing happen with 4-AP and Ampyra. All of this is fodder for a Big Pharma rant that I won't get into now.

Oxidative stress occurs as the result of the natural process of mixing oxygen and nutrients together to produce the energy needed to sustain animal life. One of the byproducts of this process are free radicals, unstable atoms or molecules that can damage or destroy healthy cells in the human body if left unchecked. Free radicals can be likened to the biologic equivalent of the exhaust fumes produced by automobile engines when they combine oxygen and gasoline to produce the energy necessary to propel a car. Just as you wouldn't want to breathe in too much of the exhaust coming out of your car's tailpipe, you don't want too many free radicals banging around inside your central nervous system doing irreparable damage.

Under normal circumstances, the human body has a variety of mechanisms in place to combat the effects of oxidative stress, by mopping up and containing free radicals before they can do much harm. In patients suffering from any one of a variety of neurologic diseases, though, it appears that the levels of oxidative stress become too great for the body's natural defenses to handle, which results, at least in part, to the damage in the brain and spinal cord seen in such diseases as Multiple Sclerosis, Parkinson's, and Alzheimer's. The reasons behind these high levels of oxidative stress remain unclear, but if they could be positively identified we'd likely only be a few clicks away from tremendous advances in effectively combating some horrendous illnesses.

Okay, enough with the scientific mumbo-jumbo, let's get to the good stuff. As I mentioned in the opening paragraph, about six weeks ago an MS friend sent me an e-mail containing a link to a study which showed that a dietary supplement called Protandim was more effective than BG-12 at stimulating the production of the same antioxidant enzymes as Biogen's soon to be approved MS drug, at least when tested in a petri dish (click here). Surprisingly, the study was sponsored by none other than Biogen! I'd never heard of Protandim, but a quick Internet search divulged the ingredients included in each Protandim capsule (click here).

Intrigued, I sent a note containing this info to Dr. Deneb Bates, the naturopathic doctor specializing in neurologic disorders who is part of the treatment team at the MS clinic where I'm a patient. Dr. Bates quickly got back to me, saying that she was a big fan of all of the stuff contained in Protandim, but that the dosages of the individual ingredients in each capsule of Protandim were too small to likely have a therapeutic effect on patients suffering from debilitating neurologic diseases. Dr. Bates suggested that I could try taking each of the ingredients individually, in dosages high enough to perhaps make a difference. First, though, she wanted to consult with my neuro, Dr. Saud Sadiq, to make sure he'd be on board with the plan. Dr. Sadiq checked my files to go over the results of some comprehensive analyses of my cerebrospinal fluid that his research lab had done a few years ago, and found that my markers for oxidative stress were tremendously high, therefore making me an especially good candidate on whom to try this experiment. So, with everyone in agreement, I started on the following program of supplements, beginning about a month ago.

Before I go ahead and detail the treatment regimen Dr. Bates came up with, I must advise anybody who would like to follow a similar treatment plan to first consult with their physician, because many of the following ingredients can interact with the wide variety of medicines MS patients typically take to control their symptoms. For this very reason, rather than start all the supplements at once, Dr. Bates wanted me to begin them a few at a time, so that we could judge which components were causing whatever negative side effects might crop up. With this in mind, on week one I started taking:

♦ Curcumin (500 mg, 3X/day)-Curcumin is a component of tumeric, a spice commonly used in curries and other Asian recipes. Curcumin has long been used for medicinal purposes in Ayurvedic medicine, the traditional medicine that has been practiced in India for about 2000 years. It has many purported beneficial qualities, and has been shown to be an effective anti-inflammatory as well as a strong antioxidant (click here).

♦ Milk Thistle (250 mg 2X/day)-Milk Thistle is a flowering plant in the daisy family that has been shown to have liver protective and antioxidant properties (click here). Before starting Milk Thistle, blood tests showed that my liver enzymes were somewhat elevated, likely because of the pharmaceutical cocktail I take to combat my neurologic symptoms and some other potentially serious health issues I'm dealing with. After only one month on Milk Thistle, my last blood test showed that my liver enzymes had fallen dramatically. Yay, Milk Thistle.

I didn't suffer any ill effects from the Curcumin or Milk Thistle whatsoever, so on week two I started:

♦ Green Tea Extract (250 mg 2X/day)-Green Tea Extract is purported to have antioxidant, anti-inflammatory, and anti-carcinogen properties (click here). Dr. Bates suggested that rather than take Green Tea Extract in capsule form, I could drink 8-10 cups of green tea a day, but I informed her that if I did that I would have to take up permanent residence in my bathroom, as I very likely would never stop urinating. Much better, for me at least, to take the stuff in capsule form.

♦ Bacopa (200 mg 2X/day)-Bacopa is a perennial flowering plant that has long been used in Ayurvedic medicine. Tests have shown it to impact the oxidative stress process, and Bacopa also exerts a positive influence on memory and mental acuity (click here). Tests also suggest that Bacopa may also be neuroprotective against Alzheimer's disease (click here).

I didn't suffer any negative side effects from the Green Tea Extract or Bacopa, so on week three I started the final ingredient, one which Dr. Bates was a little more wary of:

♦ Ashwagandha (500 mg 2X at bedtime, starting out taking only one capsule first to judge the effects)-Ashwagandha is sometimes called "Indian ginseng", because it is used in Ayurvedic medicine much the same way that ginseng is used in traditional Chinese medicine, to treat a wide variety of diseases. Ashwagandha is thought to be an adaptogen, a medication that normalizes physiological functions through the correction of imbalances in the neuroendocrine and immune systems (click here).

Unlike my experience with the previous four ingredients, I did have a hard time with Ashwagandha. Dr. Bates had me start out slowly, taking only one capsule a night, and by the second day I felt extremely sedated and very weak, with many of my neurologic symptoms noticeably ramped up. After consulting with Dr. Bates, we decided I should simply stop taking the Ashwagandha, since the goal of our experiment is to make me feel better, not worse. I was disappointed to have to stop taking the stuff, though, because of its many purported positive qualities. Dr. Bates did single Ashwagandha out to be the most potentially problematic ingredient of the bunch, and I'm glad we saved it for last and started slowly. The scientific name for Ashwagandha is Withania Somnifera, and somnifera means "sleep inducing" in Latin. Boy, in my case at least, they weren't kidding…

It's too soon to tell whether or not this adventure in naturopathic medicine is having any positive neurologic results, although my wife thinks I seem a little bit stronger. As I noted previously, my liver enzymes have come down significantly since I started taking Milk Thistle, so that's one benefit I'll definitely chalk up to the herbal medley. Dr. Bates told me she has several other neuroprotective and/or antioxidant supplements she wants to add to the mix, and I have an appointment with her in a couple of weeks to go over these. I will of course keep everyone updated if more mojo gets added to the brew.

I have to admit I was a little bit skeptical about all this going in, but the liver enzyme results can't be denied. The health of my kidneys has also been of major concern because of some of the pharmaceuticals I have to take, and recently my blood test markers for kidney function have been creeping near or above the normal threshold. Dr. Bates started me on a tincture called "Pellitory of the Wall" (eerily reminiscent of "Eye of Newt"), and after only three weeks my latest blood tests showed that these levels, too, have fallen back well into the normal range, a change so dramatic that my pain management doctor seemed stunned when the test results were faxed to him (I was there when he got them), and repeatedly insisted that he needed to call Dr. Bates to find out exactly what she had given me.

Although all of these herbs and other substances sound like something from a witches brew, I can assure you that to date I've found no evidence that Dr. Bates is a witch. I've had my eyes peeled for signs of black cats, broomsticks, and flying monkeys in her office, but so far my investigations have come up empty. She did once briefly turn me into a salamander, but I got better (apologies to Monty Python).

Again, I don't recommend anybody start this program without first consulting with their doctor, as some of the ingredients may be contraindicated by medications you're taking or some underlying condition you may suffer from. It's easy to think, "Oh, herbal supplements, what harm can they do?", but my experience with Ashwagandha definitely was a negative one, and the effects that herbal remedies have recently had on my kidney and liver enzymes were swift and dramatic. Remember, too, that marijuana and magic mushrooms are also "herbal remedies", and those certainly can pack a wallop. Not that I'd know anything about that…

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Wednesday, July 4, 2012

Bits and Pieces-It's Not the Heat, It's the Stupidity Edition - CCSVI, MS Misdiagnosis, Medical Marijuana

heat miser!

heat miser! (Photo credit: picturemommy)
Summertime, and the living is easy. Except if you have MS, in which case the heat of summer brings with it the splendors of heat sensitivity. Many MS patients experience an amplification of their disease symptoms with even the slightest rise in body temperature, and as summer temperatures soar, so too does the intensity of the potpourri of debilitating symptoms those stricken with the disease have to deal with.

Back in the days before MRIs and spinal fluid analysis, a common method of diagnosing MS was the "hot bath test" (click here), which involved placing the patient in a tub of hot water to see if their symptoms worsened. Weakness, numbness, spasticity, cognitive dysfunction, and visual disturbances are just some of the symptoms that ramp up in seeming lockstep with rising temperatures, and as record highs have been registered in alarming numbers across the US these past few weeks (temperatures in large parts of the country exceeding 100°F for days on end), I can only imagine the MS patients in those locales sticking close to their air-conditioners, trying desperately to fend off the summertime blues.

For some reason, once the outside temperature exceeds 90°F, I find that my symptoms tick up even if I stay inside my air-conditioned apartment, which may seem strange, but facts are facts. I normally don't suffer from cognitive dysfunction (at least not any more than I did when I was healthy), but when the outside temperatures reach heat wave levels, I can literally feel my thought processes slowing down, and the rest of my symptoms likewise assert themselves with growing force. I become a lethargic, weak, numb skulled mess, much like some members of this year's edition of my beloved Boston Red Sox, who don't have MS as an excuse. As if the heat and my MS wasn't enough, having to suffer through a subpar Red Sox season is making me extremely grouchy, and we've only just begun July. To make matters worse, the living embodiment of evil on Earth, the New York Yankees, are once again winning game after game, like a demonic baseball steamroller. I loathe them. Really, my antipathy for the fucking New York Yankees knows no bounds, so much so that sometimes I scare myself. Hot fun in the summertime, indeed…

Okay, now that I've strayed way off topic, on with the monthly festival of MS related news items that I deem worthy of inclusion in these "Bits and Pieces" posts. Hey, it's my blog and I'll deem if I want to, even with a mind addled by a heat wave and the vagaries of America's pastime. And don't start with me about how baseball is no longer America's favorite pastime, or I'll futilely attempt to strike you about the head and neck with my neurologically challenged extremities…

Boy, I really am grouchy. Anyway, on with the show…

♦ I've previously written about the difficulties physicians have in diagnosing MS (click here), and several recent news items highlight this troublesome situation. A recent study by researchers in Oregon (click here) surveyed 122 MS specialists, and 95% said they had seen at least one patient in the last year that had been misdiagnosed with MS by another physician. Three quarters of the surveyed MS specialists said they'd seen three or more misdiagnosed patients within the last year. The researchers speculate that an overreliance on MRI imaging for diagnosis may lie at the heart of the problem. Surprisingly, as long as that patient wasn't on any MS therapy, one in seven of the doctors who had seen misdiagnosed patients did not always tell the patient, reasoning that changing the diagnosis might cause psychological harm. Maybe I'm just a cold hearted bastard, but if I found out my doctor suspected that I had been misdiagnosed and didn't tell me, he or she would soon be definitively diagnosed with power wheelchair induced broken shins.

An MS specialist from the Mayo Clinic recently delivered a lecture stating that the misdiagnosis of MS is "underrecognized, underappreciated, and understudied" (click here). Because of the push to get patients on disease modifying therapies sooner rather than later, it seems many doctors have liberalized their criteria for diagnosing MS, resulting in the misidentification of many diseases and conditions that can mimic MS. The lecturing physician further pointed out that by quickly labeling patients with MS, treating MDs miss out on the opportunity to identify new diseases, or separate out conditions that are rarer than MS but might respond to different treatment regimens.

I've talked about the controversial nature of my own diagnosis and my years long effort to get some kind of definitive answer. I'm continuing these efforts, because in my gut my tenuous diagnosis of MS or SS (Solitary Sclerosis-click here) just doesn't feel right. The specialists who examined me at the National Institutes of Health told me that they have seen misdiagnosis rates ranging from 5%-15% in many of the studies they'd conducted on MS patients, and the above news pieces bear out the difficulties involved with diagnosing MS. I don't mean to whip up doubt among the readers of this blog, but if your MS diagnosis is labeled "atypical", or doesn't fit with your understanding of the disease, I'd suggest that, at the very least, you get a second opinion. Despite what many doctors would lead you to believe, physicians are just as human as their patients, and as such are hardly infallible. There's an old joke: "What do you call someone who graduates from medical school with a C- average?" The answer is, of course, "a doctor". Hilarious, right?

♦ On the ever turbulent CCSVI front, an important piece of investigative reporting by journalist Anne Kingston was recently published in Canada's Maclean's magazine (click here). Through the use of government memos, the article details the convoluted and often disingenuous bureaucratic contortions conducted by the government officials charged with developing government policy regarding CCSVI. Since Canada has a system of nationalized universal healthcare, the government is intimately involved with the funding and implementation of medical research. The contents of the memos cited in the Maclean's article reveal that the appearance of objectivity was often given higher priority than objectivity itself, and that quite often efforts were directed more at quieting the uproar of patients demanding research into CCSVI then at designing and funding the much needed research.

What's truly disturbing about all this is how little regard patient well-being was apparently given throughout the documented process. Certainly, a quick and decisive decision by Canadian officials to fund and conduct robust CCSVI research could very well have led to reliable answers to the many questions that swirl around CCSVI to this day. Instead, Canadians flocked to treatment centers outside of their home country, where many thousands were treated but their outcomes insufficiently tracked, so we still can't judge with any real accuracy the efficacy of the treatment protocols they underwent or even the overall validity of the CCSVI hypothesis itself. The fact that over 25,000 MS patients have been treated for CCSVI worldwide and we've heard outcome reports from only a relative handful of them represents a colossal wasted opportunity for objective research.

The results of one small Canadian study that did get done were recently released (click here). The province of Newfoundland and Labrador spent $400,000 on the study, which compared 30 patients with MS who had travelled outside the province to have the therapy and 10 who did not. Participants were subjected to an array of tests before the treatment and then at intervals of one month, three months, six months and one year post-procedure. The patients were assessed using a combination of tests — questionnaires which the patients filled out, MRI scans of their brains, and a standardized test used to gauge function in MS patients. Those tests looked at manual dexterity, ability to walk and mental acuity. At the end of 12 months, no measurable benefit from CCSVI treatment could be detected, despite the fact that many of the treated patients reported feeling better on the questionnaires that they filled out. All patients were evaluated in a blinded manner – that is, the physicians assessing the patients and their test results did not know which of the patients had undergone treatment and which had not. An 18 minute video of the news conference announcing the study results can be downloaded at the end of the article linked to above.

Although the results of this study are disappointing to those of us that believe that CCSVI plays some role in the MS disease process, because of its size and limited scope this research can in no way be labeled definitive. While the study was blinded, there was no control group (patients who had undergone a "sham" procedure) involved in the research, leaving some room for doubt. Additionally, the patients who did undergo treatment were likely treated by a variety of doctors, all using different treatment techniques and practices, as no standard treatment protocol has yet been agreed upon. Still, the study does raise some legitimate questions regarding the efficacy of CCSVI venoplasty, and patients considering undergoing CCSVI treatment should be aware that the largely glowing patient reports found on CCSVI related Facebook sites and YouTube videos do not tell the whole story. Indeed, my own extremely anecdotal experiences with patients who have undergone treatment, both in my personal life and through e-mail sent to me via this blog, indicate that a significant number of those who have treatment experience little or no benefit, and some even report a worsening of symptoms. Of course, I've also heard from many patients who do report  substantial benefit, but at present the outcome results appear to be a very mixed bag. This could, of course, speak more to deficiencies in the CCSVI treatment protocol than to the overall CCSVI hypothesis itself.

The Newfoundland study does pick up on one potential extremely problematic aspect of the current state of CCSVI treatment, in that it found that one quarter of the treated study participants had blood clots or other blockages in their treated veins at the 12 month mark. If this finding is even close to accurate, the possibility exists that thousands of treated patients may be walking around with clots in their veins with no knowledge of it, as most have had little or no postprocedure follow-up. This is just one more area of the CCSVI treatment picture that begs for quick and serious study, and suggests that the many patients who have undergone treatment should seek follow-up examinations to make sure they have not developed clots or other occlusions.

One new and extremely controversial wrinkle in the CCSVI landscape is the emergence of jugular bypass surgery , which a few pioneering (and very brave) patients are turning to after experiencing continued problems with their veins despite undergoing multiple venoplasties. Unlike catheter venoplasty, which is minimally invasive, jugular bypass surgery is extremely invasive, involving the removal of a vein from the leg to be grafted onto a blocked jugular vein by means of open neck surgery. This procedure can only be considered extremely experimental. You can learn more about it through the video testimonial of a CCSVI Alliance activist who recently underwent the surgery, which she posted to YouTube (click here).

♦ Here are a couple of studies that just might qualify for one of my favorite topics, asinine research, but I'll try my best not to be snarky about them. Really I will. Both of them have to do with the propensity of MS patients to fall, given the fact that MS makes you all weak and wobbly and stuff. The first study, out of the Netherlands, found that MS patients are at an increased risk for fractures, particularly those caused by taking a tumble (click here). Shockingly, compared to the general population, PwMS have a four times greater risk of suffering broken hips, because, well, they kind of fall down a lot more than healthy people do, what with their wonky legs and all. Astoundingly, the researchers further found that MS patients who took drugs that can cause drowsiness and decreased motor coordination, such as some antidepressants and antianxiety medications, were at any even greater risk of doing a face plant than those patients whose brains were undefiled by pharmaceutical cocktails. Mind-bogglingly, the study, which looked at records from 2415 MS patients, actually found that patients suffering from a disease of the nervous system that causes weakness, paralysis, and balance issues who take pharmaceutical drugs that can make one feel totally blotto are at much greater risk of falling down and going boom than healthy people with perfectly functional arms and legs. Who would have guessed it? After conducting this exhaustive research, the analysis concluded that efforts designed to minimize the risk of falling by MS patients would be a very good idea. Now, why didn't I think of that the last time I found myself sprawled on my bedroom floor? Stupid me.

A second study found that vision loss may contribute to problems with walking in multiple sclerosis patients (click here). This study compared 22 MS patients with 22 age matched control subjects, and found that reduced visual acuity was associated with poorer gait performance under low light conditions. The study demonstrated that many of the MS patients experienced improvements in their lowlight vision when they wore glasses with contrast enhancing yellow lenses, which actually is a useful finding. Certainly, not being able to see in conjunction with the typical walking problems associated with MS is not a great combination, and many MS patients have poor low light vision. I know that I do, as I'm blind as a bat in dim light. This study was conducted by a medical student at Florida State University, and used no commercial funding, so although the findings may seem fairly self-evident, I applaud the student for identifying a problem and actually coming up with a workable solution to it. Wearing glasses with yellow lenses helps night vision, something I wasn't aware of, which is a bit of info that definitely might keep me from stumbling in a dark room were I to put it to use.

So, a piece of potentially valuable data from a study conducted by a medical student at very little cost. Terrific. There is, though, one line in the article describing the research that did make me want to slam my head into my desk. "On the gait tests, MS patients' functional ambulation performance scores were negatively associated with EDSS disability scores, indicating that increased disability was correlated with poorer walking performance." Really? And all this time I assumed that as disability increased walking became easier and easier. Now, finally, I understand why I have to use that freaking wheelchair. Mystery solved. This, people, is why medical research is so damned important.

♦ For quite some time there have been hints that cannabis (marijuana, pot, grass, tea, boo, weed, herb, ganja, vipe, Mary Jane, reefer, chiba, muggles, chronic, etc.) might have neuroprotective properties, and thus be useful in slowing the progression of MS disability, but sadly, a recent study refutes this claim (click here). Those who are devotees of medical marijuana need not flush their doobies down the drain, though, as there is still ample evidence that partaking of the demon weed does help reduce neuropathic pain and muscle spasticity, two major complaints of MS patients. The oral cannabis spray Sativex has been approved for use to combat MS pain and spasticity in England and Canada, but not here in the good old USA, because relieving the pain and spasticity of MS patients might lead them to try harder stuff.

Hey, this gives me a nice opportunity to post a song by one of my favorite all-time musicians, Fats Waller, singing about smoking the vipe way back in 1943 (actually, this recording is a cover of a song that was originally written in 1927). Enjoy!

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Sunday, July 1, 2012

Internet Down

Sorry for the lack of a recent post, but my Internet service is down. Posting this via iPhone.

I will have a new post up as soon as I'm back in the 21st-century. In the meantime, MS still sucks big fat hairy monkey balls. So does my Internet provider.

Hope to be back up and running in a day or two…