Sunday, November 28, 2010

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

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

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

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

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

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

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


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

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

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

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

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

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

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

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

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

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

I'm still not understanding Facebook, though…


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Friday, November 19, 2010

CCSVI: Some Words of Caution

The vertebral vein.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Sunday, November 14, 2010

Surfing an Emotional Tsunami

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

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

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

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

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

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

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

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

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

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

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

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

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

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Thursday, November 4, 2010

Bits and Pieces: From Sublime to Ridiculous

Cropped screenshot of Charlie Chaplin and Paul...

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

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

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

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

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

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

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

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

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

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

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

  • In yet more drug news, the FDA has approved Nuedexta (click here for info), the first drug designed to combat "emotional incontinence", otherwise known as the pseudo-bulbar affect (click here for info). Some MS and ALS patients suffer from a very strange symptom: the inability to control their emotions, which often leads to inappropriate fits of laughing and crying. I must admit, I do get awfully weepy at some movies, and have even been known to cry at commercials, but these reactions predate the onset of my MS. Throw "Casablanca" in the DVD player, and I'm apt to start crying from beginning to end. What can I say? I'm hopelessly smitten with Ingrid Bergman, and when Humphrey Bogart makes the ultimate sacrifice, letting the love of his life, once lost but then found, fly off with another man in the name of a greater cause, well, pass me the tissues, and they'd better be two ply…
  • It appears that a slightly bonkers British chap has eclipsed me as a real Wheelchair Kamikaze. Seems this bloke has attached a gasoline engine to a standard mobility scooter, and reached speeds approaching 70 mph (click here). Hey, my hats off to him, and I heartily applaud his efforts. Wait a second, since he's using a scooter, I guess I can still hold onto my Internet moniker. He's the Scooter Kamikaze. And, in keeping with mobility device kamikaze tradition, he made a pretty cool video of his exploits…
  • And in news that has nothing at all to do with MS, it seems that a time traveler has been caught in a 1928 film starring Charlie Chaplin. In the background of a scene in the Chaplin film "The Circus", it appears that a woman walks by apparently talking into a cell phone. Of course, cell phones weren't invented back in 1928, so her actions are quite mysterious. I love the idea of time travel, and if one day I seem to simply disappear, look for me back in 1935, dancing a mean jitterbug at The Savoy Ballroom in Harlem, burning my shoe leather to some big band version of Fats Waller's "This Joint Is Jumping". I'm assuming, of course, that traveling back in time would cure my MS. Anyway, here's a piece from the Chaplin film, showing the alleged time traveler…
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Monday, November 1, 2010

National Public Radio Segment on CCSVI Postponed

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

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

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

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

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

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