What better way to celebrate the New Year than to post a bunch of new photos to my Wheelchair Kamikaze photo gallery? Who needs silly hats, noisemakers, confetti, countdowns, dropping balls, Auld Lang Syne, consuming copious amounts of champagne, kissing attractive strangers at the stroke of midnight, dealing with amateur drunks throwing up all over the place, waiting endlessly for nonexistent taxicabs (maybe just a problem in NYC), assiduously avoiding stepping in the wide swaths of vomit left by the aforementioned amateur drunks, or hoping vainly that the coming year will provide answers to all of life's problems? Much better to post photos on your surprisingly popular MS blog.
Truth be told, in my younger, healthier days I used to be absolutely mad about New Year's Eve, even though I was a habitual prowler of the night and compulsive chaser of the seductive pleasures it promised. Most of my fellow denizens of the dark held the holiday in holier than thou contempt, horrified that our dimly lit world would be so sullied by an army of once a year dilettantes, invaded by hordes of unseasoned dabblers in the murky nocturne.
Still, the allure of New Year's Eve held me in its thrall, its promise of renewal, second chances, and new beginnings far too enticing to be passed up. The reality of the evening’s festivities rarely lived up to their anticipation, and quite often descended into a farcical scramble from one party to the next, crisscrossing the town in vain pursuit of that perfect fete that likely only existed in the imaginations of me and my companions. In retrospect those long-ago madcap journeys were far more entertaining than their intended destinations, and my youthful New Year's Eve misadventures provided fodder for many a happy memory. Yes, those were the days of wine and roses, and I wouldn't trade them for anything in the world.
I still love the idea of the out with the old, in with the new spirit of New Year's Eve, although living with a chronically disabling disease does put something of a damper on any excited anticipation of the future. The annual holidays serve as markers along the road of disease progression, as a quick review of recent New Year's Eves past makes my declining physical state glaringly apparent, and begs the question of what further insult and damage this next stanza might hold. Then again, this could be the year that things take a turn for the better, as I have some interesting new treatment options to explore (more on these in later blog entries), and my lack of a definitive diagnosis leaves open all sorts of possibilities. So, damn the torpedoes, full speed ahead! All anybody really has is the present moment anyway, the past is gone and the future is inscrutable, so live for today, and today is New Year's Eve, so might as well celebrate it like it will be the last New Year's Eve in history. Hey, if the Mayans were right, it will be (click here)…
Anyway, I seem to have veered far from my original intent to write a quick paragraph and post a few photos, so let's get on with the photo posting. The following shots are a mixed lot, almost all taken in Central Park, a few with the toy camera lens I like to play with (click here), and others extreme close ups of flowers taken with a macro adapter attached to another funky cheap lens I like to mess with. They were all shot with a camera mounted to the arm of my wheelchair, as my wonky physical state makes it impossible to hold a camera to my eye. As always, comments and critiques are highly valued, negative and positive alike. So, feel free to tell me which photos you love and which shots you loathe, and above all, I wish you all a wonderfully happy new year!
(note: for those who receive this via e-mail, this post contains some video links, which can only be accessed from the Wheelchair Kamikaze website itself)
Well, it's again that time of year when a jolly fat man in a red velvet suit slides down chimneys and performs home invasions in an endless search for cookies and milk. Yup, it appears my uncle Bart is once again off his meds. I think it may be time for an intervention…
The holiday season is upon us, but unlike in conflicts of old during which a truce was often called in reverence to the holiday, the war that MS wages upon its victims continues unrelentingly, as does the attempted counterattack being fought against MS. There's plenty of research news to catch up on, and I'll throw a few other seasonal tidbits on the Yuletide fire to keep with the holiday spirit.
So, grab a nice cup of spiked eggnog, hot cider, or kosher wine, as I submit the following items for your perusal, all the while wishing you a Merry Christmas, Happy Hanukkah, Good Kwanzaa, or, if none of those float your boat, then just a damn good week…
♦ Speaking of alcoholic beverages, a new study out of Belgium suggests that drinking booze and coffee, and eating fish may help delay disease progression in patients with relapsing multiple sclerosis (click here-may require free registration, which is well worth it for the wealth of information available on this site). Unfortunately, the same does not hold true for patients with progressive MS, whose intake of these substances didn't significantly alter the course of their disease. As usual, progressive patients are the redheaded stepchildren of the MS world, spanked in the ass and sent to bed without dinner. Smoking was found to be detrimental to both relapsing and progressive patients.
Researchers found that relapsing patients who drank moderate amounts of alcohol and coffee, and ate fish at least two times a week, had a significantly increased time of disease progression to the level of EDSS 6, which is defined as the point at which a patient needs intermittent or unilateral constant assistance (cane, crutch or brace) to walk 100 meters with or without resting. Interestingly, in progressive patients it appears that the type of fish eaten (fatty or lean) impacted the speed of progression. Patients who ate fatty fishes (such as salmon, tuna, and mackerel) fared worse than those eating leaner varieties.
The discrepancy between relapsing and progressive patients' response to the dietary influences studied is likely attributable to the fact that relapsing disease is more inflammatory than progressive, and alcohol, coffee, and fish all have anti-inflammatory properties. Fatty fishes tend to pick up more environmental toxins, which may account for their association with increased rates of disease progression.
♦ A major new study recently completed by the Mayo Clinic in collaboration with the Cleveland Clinic has the potential to completely rewrite the scientific understanding of how multiple sclerosis develops and progresses (click here, same deal with possibly having to register). For many years, the conventional wisdom has been that MS started deep in the brain, attacking white matter (myelin) first, and only later disrupting a patient's gray matter (nerve cells). In examining brain biopsies taken from patients very early in the disease process, the researchers discovered that, much to their surprise, there was inflammation and damage being done to the meninges (the membrane covering the brain), the subarachnoid space (which contain cerebrospinal fluid), and the gray matter, occurring concurrently with early damage done to myelin. In other words, instead of working from the inside out, the disease may work from the outside in.
The fact that such a basic understanding of the disease may have been wrong for many decades only underscores how pitifully little is actually known about the MS disease process, despite the tremendous amount of time spent researching the disease. This could be a discovery of terrific import, and may eventually turn the way MS is treated completely on its head. Interestingly, some news outlets reported this research as finding neurodegeneration in the absence of inflammation, which is incorrect. One of the lead researchers on this project, Dr. Claudia Lucchinetti, has done some previous research that hinted at such neurodegeneration, but this most recently released research finds inflammation throughout the CNS of patients very early in the disease process. Here's a video of Dr. Lucchinetti talking about the discovery:
♦ Another new hypothesis about the genesis of multiple sclerosis is being published in the Quarterly Review of Biology. Entitled "MS Is Not a Disease of the Immune System", the paper suggests that MS is a result of faulty lipid metabolism, or the inability of the body to properly uptake, breakdown, and release lipids (click here). In this scenario, an accumulation of toxic lipids, in conjunction with other genetic or environmental factors, leads to damage in the central nervous system and eventually to a clinical presentation of multiple sclerosis. Rather than get into a lengthy explanation here, I'll refer you to the blog of Nicola Griffith, a writer living with MS (click here). Her description of this new theory is quite clear and extremely well presented, and a big thanks to Nicola for bringing this research to my attention.
♦ In keeping with the Christmas spirit, here's a lovely little story about an MS patient who was ripped off to the tune of $65,000 by her health aide (click here). I'm constantly coming across news stories about MS patients being assaulted, having their wheelchairs or scooters stolen out from under them, or otherwise being criminally victimized. WTF? Some humans simply don't deserve to be called humans. Now, we've all committed deeds that would make our mothers embarrassed to have borne us, but by and large the MS patients I've met are a pretty decent lot. Who knows, maybe some were scumbags before getting sick, but I don't get that sense. Although my rational self knows not to expect some sort of easily discerned "just universe", it still galls me to no end to watch the nightly news and see a parade of murderers, rapists, and child molesters sauntering effortlessly past the cameras, even while handcuffed. Why do these evil, demented, living and breathing turd blossoms enjoy robust good health while so many decent folks I know suffer miserably with a progressively crippling disease? That's strictly a rhetorical question, no need for any direct answers…
♦ Here's a thought-provoking piece published in the Washington Post, entitled "Was My Doctor Loyal to Me, or to the Drug Companies?" (click here). Now, there's a question that has crossed the mind of many a patient. With the tentacles of Big Pharma reaching into almost every aspect of what I like to call the Medical Industrial Complex, one can never be sure if treatments are being offered because of their superior efficacy, or because the physicians prescribing them have been influenced by the largess of the drug companies producing them.
My personal neurologist doesn't allow any pharmaceutical reps into his clinic, and the facility is completely absent posters, pens, pads, or promotional materials of any type hyping one drug or another. This is in direct contrast to the offices of all of my other physicians, upon which the name of one pharmaceutical or medical device product or another is emblazoned on every available surface, placed strategically to be ingested wherever my gaze happens to land. Why the practice of Pharma companies paying off doctors (either as "consultants" who barely do any consulting, or with invitations to lavish "educational symposiums" held in luxury resorts, whose primary teaching function appears to be how to sink an 18 foot putt) is legal is beyond me. When I worked in the music industry, the practice of paying off radio station managers and DJs to play our labels' music was called "payola", and people who were caught engaging in this practice wound up doing time in the clink. Not so with Big Pharma and physicians, though. In an industry where the health and well-being of an entire nation is concerned, barely camouflaged bribery is considered business as usual. Ho Ho Ho, Merry Christmas…
♦ This is the time of year when charities rake in a tremendous amount of donations. I'm often asked which MS nonprofits are most worthy of my friend's and family's money, so here's a list of very worthy MS research organizations. These are all smaller outfits, dwarfed by the giant elephant of the MS nonprofit universe, the National Multiple Sclerosis Society. Unlike some other bloggers and activists, I have nothing against the NMSS. Although it might not always act quite the way I would like it to if I were king of the forest, the organization does do a tremendous amount of good across a wide array of issues impacting patients suffering from Multiple Sclerosis. The problem is that to the general public the NMSS is THE multiple sclerosis organization to which to donate, leaving the little guys scrambling for scraps. The following organizations all do exceptional work, and are very deserving of any donations that flow their way:
· The Accelerated Cure Project (click here)-this group maintains a large MS repository, consisting of blood samples and extensive demographic data taken from well over 1000 MS patients, making it an extremely valuable resource to researchers worldwide. 2011 saw the 50th research project done using repository samples and data, and the ACP is currently putting together a repository devoted to neuromyelitis optica and other demyelinating diseases.
· The Myelin Repair Foundation (click here)-the MRF is devoted to revolutionizing the way MS research is done, dramatically shortening the time it takes to shepherd a potential treatment from discovery through regulatory approval. The MRF, founded by Scott Walker, himself an MS sufferer, is especially devoted to hastening the development of neuroregenerative and neuroprotective therapies, which are the holy grail of MS research.
· The Multiple Sclerosis Research Center of New York (click here)-this is the research arm of the MS clinic that takes care of me, under the direction of Dr. Saud Sadiq. This completely independent research center is on the cutting edge of MS research, and recently won approval for one of the first regenerative MS stem cell trials to be done in the United States. In addition to extensive stem cell research, MSRCNY scientists are hard at work exploring new and more effective MS treatments, looking for biomarkers to increase the diagnostic accuracy of the disease, and providing dramatic symptomatic relief for MS sufferers. Lots of outside of the box thinking going on in this place.
· The Buffalo Neuroimaging Analysis Center (click here)-BNAC is at the forefront of CCSVI research, conducting extensive imaging studies on MS and non-MS subjects that have already shed much light on the CCSVI hypothesis and its role in the fight against MS. Led by world-class researcher Dr. Robert Zivadinov, BNAC is also undertaking one of the first CCSVI treatment trials being done to strict scientific standards. CCSVI has the potential to profoundly change our understanding of MS, and BNAC has the potential to be the organization that unlocks the secrets of CCSVI.
· The CCSVI Alliance (click here)- the CCSVI Alliance promotes education and research about CCSVI and its relationship to Multiple Sclerosis by providing objective information to the MS community, supporting medical investigations of CCSVI, and fostering collaboration among patients, advocates, and professionals. They are currently working on patient education programs at major conferences around the country, and are working hard to encourage the interdisciplinary cooperation needed to unravel the mystery of CCSVI.
Well, as we come to the end of this post, I realize it might not have been filled with as much joviality as I initially intended. Sorry for that, and despite the "Bah Humbug" nature of much of the above, I'd like to sincerely wish all WK readers (and all non-WK readers) a scintillating holiday season. May all your wishes be realized, and all your dreams come true.
Here's a holiday song that seems especially fitting given the current state of world economic turmoil, which finds far too many struggling just to keep their heads above water. It's performed by a great rock 'n roll band that has long been vastly underrated. As the song says, "Have yourself a Very Merry Christmas, Have yourself a good time, But remember the kids who got nothing, As you're drinking down your wine".
One of the great paradoxes of dealing with MS: it's a disease one of whose hallmark symptoms is weakness, yet it demands the utmost strength from those dealing with it. From the psychological impact of the debilitating nature of the disease itself, to the shifting landscape of compromises and adjustments the patient must make in an attempt to maintain some semblance of normalcy, to the frustrations of dealing with an often maddening medical infrastructure, to the well-intentioned but misguided efforts of friends and family, to the sometimes heart wrenching indifference of the world at large, MS presents hurdles and challenges that require a measure of fortitude, grit, and endurance that most suffering from it never imagined they possessed. And yet as a group MS patients soldier on, displaying quiet courage and the hearts of lions.
Those suffering from the relapsing forms of the disease must deal with an illness ever lurking in the background, waiting to strike once again and leave them reeling. When each new attack finally subsides, often left behind are lingering symptoms, some weakness here, a little cognitive dysfunction there, distressing calling cards serving as permanent reminders that, despite all outward appearances, trouble resides within. Patients bestowed with the wonderfulness of progressive disease get to experience the pleasure of watching themselves circle the drain, day by day, month by month, year by year. Like the gradual shortening of days from July to December, the change barely noticeable on a daily basis but quite dramatic over the long haul, the disease creeps along an almost imperceptible pace, molehills becoming mountains with the passage of time. The slow but steady drip of the disease can lull one into to a false sense of security, until the guttural realization strikes that some physical action done without a thought only last year has now become cumbersome at best, impossible at worst. Yes, you can't be too strong.
Despite the obvious mettle needed to meet such challenges, many patients castigate themselves for their inability to withstand the ravages of the disease, disgusted with the fact that sheer force of will cannot beat back the onrushing tides. I have a close MS friend who every day fights through crippling spasticity so excruciating it often literally brings him to his knees but still manages, using a variety of disability aids and mobility devices, to put in his day at the office, sometimes forced to drive by using his arm to physically lift his leg on and off the gas and brake pedals (not recommended, by the way), compelled by his overwhelming desire to provide for his family and not give in to the disease. By day's end he can barely make it back into his house and onto the couch, scarcely able to lift his head, but instead of acknowledging his extraordinary efforts, he beats himself up over his perceived lack of toughness, his powerlessness to simply put a stop to the beast that so insistently ravages his body.
I recognize this same tendency in many of the patients I'm in contact with, and at times in myself. I put off the purchase of a power wheelchair for far too long, unwilling to acknowledge my tremendously obvious need because of the complicated psychological interplay of ego, self-image, and sensitivity to how I might be perceived. I sentenced myself to house arrest in a foolhardy effort to maintain an inner illusion of strength, when in fact true strength was only achieved when I finally gave in and reconciled myself to my need and situation. In a kind of mental jujitsu, what I thought was strength was actually weakness, and in turn, the very symbol of weakness, the wheelchair, became testament to a moment of strength when I finally let go and accepted my new normal. Yes, you can't be too strong.
Apart from the strength needed to deal with the disease itself, navigating through the labyrinthine and often counterintuitive tendencies of the modern medicine machine can test the determination of even the most valiant among us. Instead of making things easier on those suffering from chronic disease, it sometimes seems like the deck has been intentionally stacked against us. Trying to make sense of the never ending stream of research and theories about the disease can be mindbending. MS is autoimmune! MS is infectious! MS is caused by faulty veins! It's all the fault of genetics, toxins, vitamin deficiencies, dietary imbalances! Why not throw in out of balance humors, or unfortunate astrological alignments? Does anybody know what the frack they're talking about? What seems crystal-clear one minute is thrown into doubt the next. Up is down, down is up, and all the while I still can't use my right arm and leg, dammit!
The human tendency to become emotionally wedded to a particular idea or orthodoxy often pits patients against patients, in never-ending circular arguments that ultimately may only serve those who are all too willing to make a buck from our compromised circumstances. We must deal with pharmaceutical companies mandated to be more concerned with the bottom line then with patient well-being, and with doctors who are very often under their sway. Never is it more evident that modern medicine is a business than when you realize that most of the MS research news is reported on the financial pages of the newspaper. Desperately searching for something, anything to hang our hope on, we can be easy prey for practitioners of "alternative" medicine, who may be charlatans or saviors, often indistinguishable when cloaked in the fog of the ongoing battle and blinded by increasingly desperate circumstances. The constant clutter of contradictory and conflicting information can seem impenetrable, yet precisely because of this information overload it is imperative that we attempt to keep ourselves informed and clear headed, in order to self advocate in an environment that demands it. Yes, you can't be too strong.
We suffer through the indignities heaped upon us by miserly insurance companies and incompetent practitioners. Can there be a more surreal experience than having to fight with an insurance company drone to try to get an approval for a drug that has the potential to kill you? When I finally capitulated and agreed that I needed a wheelchair, I was greeted by wheelchair vendors who quite blatantly tried to pawn off products that obviously did not suit my circumstances but would do the most to fatten their commission checks, and by insurance company rules and regulations clearly designed to win a battle of attrition in the expectation that a needful patient will simply weary of the fight and take whatever is offered. In order to get a chair with qualities that would enable it to hold up under the rigors of the streets of NYC, I had to repeatedly appeal insurance company decisions, and to whom do those appeals go? Why, the very same insurance company, of course! After months of constant screaming battles, and with the help of the physical therapy staff at my neurologists office, I was finally granted an approval for the appropriate chair, a device the thought of which, at the time, left me slightly nauseated. It might have been easier to try to part the Red Sea.
In closing, I'll relate a story that another dear MS friend of mine recently told me. She requires home health aides to help her through the day, and a few weeks ago asked one to fix her a can of soup. My friend directed the man to the cupboard that contained the soup can, and to a drawer that held a good old-fashioned manual can opener, the kind that clamps to the edge of the can and then opens it through the action of the user twisting a rotating handle. The aide picked up the contraption and held it in his hands, stupefied. Somehow, this middle-aged man had never before even seen such a can opener, a device I believe I learned how to use when I was about five years old. In startled disbelief, my friend had to instruct the aide, in step-by-step fashion, exactly how to operate the befuddling instrument. When he was done, the aide explained to my severely disabled friend that being a home health aide was only his "hobby", and that he was a financial planner by profession! Given the bang up job the financial wizards have done with the world's economy, it's little wonder a manual can opener fell far outside this man's power of comprehension. Geez, you think the guy might be better off taking up birdwatching or stamp collecting, benign pastimes in which his gaps in rudimentary knowledge might not negatively impact the day of a sick person?
The last two months have brought a deluge of MS research data, much of it coming out of October's ECTRIMS (European Council on Treatment and Research in Multiple Sclerosis) conference, this year held in Amsterdam. While the meeting was dominated by the release of drug study data (naturally), there was also tantalizing research data revealed regarding CCSVI as well as a number of other MS related matters. I'll attempt to provide a broad overview of the recent research goings-on, and will try my best to not put readers to sleep with too much scientific mumbo-jumbo. Just in case, better grab a blanket and a pillow, because I have a feeling this is going to be long…
♦ CCSVI - On the CCSVI front, ECTRIMS appears to have been the latest venue for the ongoing pissing war that's being waged between CCSVI supporters and detractors, featuring dueling research reports, most of which are entirely based on imaging studies finding greater or lesser degrees of venous abnormalities in MS patients. To my mind, the problem with all of these studies, both pro and con, is that the imaging techniques used (MRVs and Doppler sonography) are prone to technical and/or operator error, so the wide disparity in findings may more reflect the failings of the technology then the hypothesis being explored. MRVs are highly subject to artifacting, and sonography is extremely operator dependent. While time and experience has brought more accuracy to both technologies in regards to revealing CCSVI, the fact remains that the only way to assess the state of a patient's veins with a high degree of accuracy is to actually go in and explore those vessels with an invasive (minimally) catheter venography, which so far has proved impractical for large-scale study purposes, especially when it comes to subjecting healthy subjects to a potentially (again, minimally) risky procedure.
While quite a few studies were presented that refute the theory that multiple sclerosis has a vascular component (click here), some others provided intriguing finds that support the CCSVI hypothesis. The most striking of these was a small study out of the esteemed Cleveland Clinic that compared jugular and azygos veins taken postmortem from the cadavers of MS patients and healthy control subjects. This of course begs the question, can a cadaver truly be a healthy control subject? Certainly, healthy though they might once have been, at the very least they'd be terrible guests at dinner parties. But I digress… The unique aspect of this study is that investigators were actually able to hold and examine the veins in question, the only imaging technology utilized being the ever trusty human eye (presumably aided by some type of optical magnification).
Although quite small, limited to only 13 subjects, the study hints at some rather dramatic trends (click here). The researchers looked at the veins of 7 MS and 6 non-MS subjects, and found a variety of structural abnormalities and anatomic variations. Interestingly, vein wall stenosis (narrowing) occurred in equal numbers among the MS and non-MS samples. More prevalent in the MS veins, though, were abnormalities involving malformed valves and anomalous membranes (structures such as webs and septums that shouldn't be there) which could lead to disrupted blood flow. These types of abnormalities would be difficult to spot using noninvasive imaging methods, casting further doubt on studies reliant strictly on traditional MRV in particular, and also Doppler sonography unless the operators were well-versed in protocols specifically designed reveal such anatomic irregularities.
The findings of this study, if borne out by future, larger investigations, could shed light on the wide disparity in benefit (or, often, lack of benefit) experienced by those who have undergone CCSVI venoplasty (click here for a terrific discussion of this, written by Julie Stachowiak of about.com). Many CCSVI treatment procedures, especially those done within the first year or so after knowledge of CCSVI hit the mainstream MS population, concentrated primarily on areas of venous narrowing, which the Cleveland Clinic findings suggest are not as abnormal as first thought. Since these narrowings were seen in equal numbers among MS and non-MS subjects, they may fall within the parameters of normal anatomic variation, and have little actual significance.
The high prevalence of malformed or misplaced valves and other anatomic structures within the veins of MS patients, on the other hand, could very well prove to have considerable import. Although the goal of CCSVI treatment has in large part shifted away from simply expanding narrowed veins and moved more towards clearing malformed or otherwise broken valves, aberrant membranes would in many cases be difficult to treat using the balloon venoplasty techniques currently employed to address CCSVI. In theory, some of these treatments may have coincidentally alleviated the effects of such abnormal membranes by disrupting them and compressing them against the vein walls of treated patients. If this were the case, and these membranes eventually returned to their original form, this might explain the far too common phenomenon of restenosis experienced by patients treated for CCSVI. The failure to properly treat malformed valves and abnormal and misplaced membranes within the veins might also explain the failure of CCSVI treatment to significantly benefit many of those who have undergone treatment. This of course assumes that the MS-CCSVI link exists, which despite a growing body of anecdotal evidence, still needs to be confirmed by scientifically robust studies.
The Cleveland Clinic cadaver study certainly illustrates how little we still actually know about CCSVI and the proper way to treat it, and that some of the initial assumptions upon which treatment methodologies were based might have been misguided. Certainly, should CCSVI prove to be a vital piece of the MS puzzle, CCSVI venoplasty techniques must be refined, and very likely equipment and devices specifically designed to treat the condition effectively need to be developed and put on the market. As I've mentioned in previous posts, the study and treatment of CCSVI is still in its infancy, and patients and physicians alike need to be careful not to put the cart before the horse, despite the tremendous amount of hope and excitement that CCSVI has generated.
Another interesting CCSVI research project, conducted by the Buffalo Neuroimaging Analysis Center (BNAC) looked at the phenomenon of CCSVI in healthy patients, and attempted to identify risk factors that might be involved in the development of the condition (click here). BNAC has imaged hundreds of MS patients and healthy controls, and found that CCSVI is present in roughly 25% of non-MS subjects. By pinpointing the factors that might lead to the development of CCSVI in otherwise healthy people and cross-referencing these with known risk factors for MS, the relationship between CCSVI and MS might better be assessed.
Since a picture is said to be worth a thousand words, I suppose a video made up of moving pictures would be worth several million words, so, in the interest of saving you pages and pages of reading, here is the head researcher at BNAC, Dr. Robert Zivadinov, discussing the results of this study:
Indeed, the findings of this study are fascinating, in that many of the known risk factors of MS (particularly infection with the Epstein-Barr virus) also seem to be prevalent in healthy subjects who exhibit CCSVI when subjected to noninvasive imaging techniques. As Dr. Zivadinov stated, study findings such as these only emphasize the need for continued, multidisciplinary research into the CCSVI-MS connection. My e-mail inbox sees a steady flow of notes from patients who have benefited from CCSVI treatment, but also a disturbingly high number of reports from patients disappointed in the lack of results they've experienced. The CCSVI story has only started to be written, and with more research results set to be released in the coming months, our knowledge of the condition should expand exponentially.
Perhaps the most well-known MS sufferer to undergo CCSVI treatment is Montel Williams, who recently discussed his experience in this video with the celebrity physician Dr. Oz. Unfortunately, Dr. Oz gets some of the particulars about CCSVI treatment wrong, but there certainly is value in Montel's testimony. Here is Montel's story, in his own words:
♦ Pharmaceuticals -some late stage MS drug trial results have been released recently, most describing extremely positive results. Disparaging Big Pharma is a favorite pastime of mine, and I think the pharmaceutical companies deserve all the disparaging they can get, due to their sometimes devious and deceitful ways of doing business, and their iron grip on most of the medical research that takes place in the USA. Unlike some other MS advocates, though, who disparage all Big Pharma MS products as snake oil, I've come to realize the value of the ever-expanding arsenal of disease modifying drugs. Though none of them offers anything close to a cure, for those patients who find them effective, they do increase quality of life, sometimes dramatically so. Of course, many of them do come with a laundry list of frightening potential side effects, but by reducing relapse rates and in some cases alleviating the burdens of disability, the current crop of disease modifying drugs has been a godsend to the patients on whom they are effective. Hopefully some of the newer compounds on the horizon will be all the more effective while at the same time limiting deleterious side effects.
One of the most promising new compounds is BG 12, an oral MS drug being developed by Biogen. Also known as oral fumarate, BG 12 has been shown in late stage phase 3 trials to not only dramatically decrease relapse rates and the number of lesions seen in the MRIs of treated patients, but also appears to significantly delay the progression of the disease in some patients (click here). Research results showed that BG 12 reduced relapse rates by 50% when compared to placebo, and also reduced the risk of disease progression by 38% over placebo. The drug works in a way very different than any existing MS medication, by suppressing pro-inflammatory factors called cytokines, and possibly providing some protection against nerve cell death. Encouragingly, the drug also appears to have a very benign side effect profile, with the most common side effects being gastric disturbances and diarrhea. The drug does not appear to open patients up to opportunistic infections or cancers, as do some of the other available MS pharmaceutical therapies. Given that BG 12 is an oral drug that seems to be very effective, and carries with it a relatively benign side effect profile, I expect this drug may prove to be very popular with patients and the doctors who treat them.
Genzyme announced the results of phase 3 trials of the drug Alemtuzumab, which was previously known as Campath and will be marketed under the name Lemtrada (click here). This very powerful drug is given intravenously, with infusions once a day for 5 consecutive days for the first treatment and then, a year later, 3 infusions during 3 consecutive days. Lemtrada severely depletes the human immune system, acting on both lymphocytes and monocytes, which are then reconstituted by the body, resulting in permanent changes in the immune systems of patients treated with the drug. In effect, Lemtrada "reboots" the immune system, in the hopes that the reconstituted immune system will no longer attack a patient's own nerve cells. Trial results showed Lemtrada to reduce relapse rates by 49% when compared to patients taking Rebif, along with a 42 percent reduction in the risk of sustained accumulation (worsening) of disability as measured by the Expanded Disability Status Scale (EDSS). Previous trials have shown that the effects of Lemtrada are very long-lasting, with patients showing significant benefit five years after initial treatment ended (click here). However, while these results are very impressive, Lemtrada does carry with it the risk of some serious side effects. About 16 % of treated patients develop autoimmune thyroid disease, and 1% develop a potentially lethal autoimmune blood disorder known as ITP. Because of this, patients using the drug must be carefully monitored, and use of Lemtrada may be limited to patients with highly active disease. Research is currently underway to develop ways to identify patients most at risk for the autoimmune side effects of Lemtrada, to more easily identify patients who should be excluded from this treatment option (click here).
The potential MS vaccine Tovaxin has been granted fast-track status for the treatment of SPMS by the FDA (click here). Fast-track status can cut in half the time it takes a drug to be approved, and if Tovaxin does eventually get such an approval, it will only be the second drug specifically approved for the treatment of secondary progressive multiple sclerosis in the United States. Tovaxin is a compound individualized for each patient, which desensitizes a treated patients immune system T cells to their own nerve cells, thereby stopping the autoimmune reaction (click here). Several years ago, Tovaxin failed to meet the goals of its phase 2 trials (click here), and although it had shown great promise, was left for dead. The company developing it, Opexa, later re-examined the failed trial data and determined that Tovaxin had indeed demonstrated positive effect, and now Tovaxin has risen like Lazarus, giving it (and Opexa's stockholders) new life…
A study done to assess the risk of stopping Tysabri for "drug holidays" showed that this practice significantly increases the risk of patients suffering MS relapses within six months after stoppage (click here). The idea of drug holidays came about because Tysabri is linked with PML, a potentially fatal brain infection, the risk of which increases with the amount of time a patient is on Tysabri. It was thought that taking occasional breaks from Tysabri might allow the immune system to reconstitute itself enough to combat the emergence of PML, but this study suggests that temporarily switching to another MS therapy unfortunately carries with it an increased risk of patients suffering an MS relapse. Kind of a "damned if you do, damned if you don't" scenario…
♦ Miscellaneous Studies - A variety of other MS related research results have also recently been announced. The active ingredient in the spice saffron may prove to be effective in combating MS (click here). In experiments, this ingredient was shown to combat inflammation and cell stress, at least in petri dishes and test tubes. Interestingly, saffron is often used in Asian cuisines, and the incidence of MS is much lower in Asian countries than it is here in the West. The spice tumeric (cumin) has also been shown to have strong anti-inflammatory properties, and this spice too is used heavily in some Asian cuisines. So go out and have some Indian food, it's good for you. Chicken Tikka Masala, yum…
Researchers in Sweden have discovered that young people between the ages of 16 and 20 who work overnight shifts or odd hours are twice as likely to develop multiple sclerosis as those who never worked such hours (click here). The researchers explained the sleep restriction associated with working the night shift has already been shown to increase the risk for certain health problems, including heart disease, thyroid disorders and cancer, likely by interfering with melatonin secretion and increasing inflammatory responses. Kind of an odd finding, but upsetting circadian rhythms has been shown to have an adverse effect on health, so these Swedish meatballs might be on to something…
German researchers have linked gut bacteria to multiple sclerosis (click here). We all have millions of microbes living in our guts, normally to no ill effect. However, more and more research links these bacteria to some autoimmune diseases. The researchers who did this study used mice genetically engineered to develop a Multiple Sclerosis like disease, and allowed some to develop gut bacteria, and others to remain gut microbe free. About 80% of the mice with gut bacteria went on to develop MS like symptoms, while none of the sterile mice did. While it's a far cry to go from mice to humans, this study does demonstrate that intestinal microbes do interact with the immune system, something that has long been suspected. Of course, most of the bacteria are in our guts is harmless, and some even serve a beneficial effect, but these research results certainly warrant further investigation.
Well, let's call it a wrap. There's an astounding amount of MS research being conducted, much of it driven by the huge profits to be made treating MS patients with hyper expensive drugs that tamper with the little understood human immune system. Still, as is evidenced by the last few investigations I mentioned, the breadth of MS research is quite wide, and each bit of knowledge uncovered may hold the key that finally unlocks the puzzle that is MS. Certainly, research into CCSVI has the potential to upend much of the conventional wisdom regarding the disease, and it's of the utmost importance that MS patients themselves drive such research forward, by educating themselves, advocating for energetic and innovative research into the disease, and agitating against those who stand in the way. Power to the people, y'all…
