Tuesday, February 22, 2011

The Misdiagnosis of Multiple Sclerosis, and the Mystery of Me…

Detail of plate 4, figure 4 of Pathological An...

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As most patients know, diagnosing Multiple Sclerosis is no easy matter. Despite sophisticated diagnostic tools and techniques, such as MRI imaging, spinal fluid analysis, and visual and sensory evoked potentials, the diagnosis of MS remains one of exclusion, meaning that other likely diseases must be eliminated before a conclusive diagnosis of MS can be made. There is no test or tests that can definitively determine whether or not a patient is suffering from MS. There are indicators that are strongly suggestive of MS, such as brain and/or spinal cord lesions seen on MRIs, and oligoclonal bands (O-bands) in the Cerebrospinal Fluid, but even the presence of these does not guarantee that a diagnosis of MS is correct.

Although MRIs can detect lesions in the CNS, they can't determine specifically what those lesions are, as a tumor and an area of demyelination can often look much the same on an MRI image. Therefore, a subjective determination of the nature of any lesions found must be made by a radiologist or neurologist. O-bands in the CSF indicate immune activity in the CNS, but they are not specific to MS, as other conditions can also create them. A relapsing remitting course of disability onset is highly suggestive of Multiple Sclerosis, but this too does not rule out other disease possibilities, and some MS patients present with a progressive course of the disease. In the book " Multiple Sclerosis: Diagnosis, Medical Management, and Rehabilitation", neurologist P. K. Coyle writes:

"… early accurate diagnosis is critical. It guides optimal therapy, removes uncertainty, allows informed planning, and improves the patient's sense of well-being by providing an explanation for their problems. Unfortunately, the misdiagnosis rate for MS approximates 5% to 10%, even by experienced healthcare providers"

In an effort to cut down on the number of misdiagnoses, in 2001 a set of diagnostic guidelines was developed, called The McDonald Criteria (click here), that attempts to quantify the test results and clinical presentations necessary for a definitive diagnosis of each of the various forms of MS. In 2009, however, I took part in a study at the National Institutes of Health (the United States government's medical research facility) that was designed specifically to look for patients with Clinically Definite Multiple Sclerosis (more on my experience in the study later). The NIH undertook this study because they had found that the rate of misdiagnosed patients recruited for their MS research studies was at least 10%, and the data from these patients was polluting their research results. The doctors at the NIH were attempting to identify a pool of patients that they were confident actually have Multiple Sclerosis for use in future studies.

There are many diseases and conditions that can be mistaken for MS, including Lyme Disease, Hughes Syndrome, Primary Lateral Sclerosis, Neuromyelitis Optica, Vitamin B12 Deficiency, and Lupus, to name a few. The paper "The Differential Diagnosis of Multiple Sclerosis" (click here) gives a comprehensive overview of the many red flags that doctors must look for when diagnosing MS, and includes a list of 100 diseases that can be misdiagnosed as MS. Another valuable paper on the topic, "Differential Diagnosis of Suspected Multiple Sclerosis: a Consensus Approach" (click here) provides a list of symptoms that should lead a physician to question a diagnosis of MS, and discusses four of the diseases most likely to be misidentified as MS.

If you have reason to question your diagnosis, the above materials can be invaluable. However, be careful not to drive yourself crazy with the information they contain, as they provide so much data that it's very easy to convince yourself that you've been wrongly diagnosed. Even with a misdiagnosis rate of 10%, the vast majority of patients have in fact been given the correct diagnosis.

My own case illustrates the difficulties involved with reaaching a conclusive diagnosis of MS, to the extreme. I had doubts about my diagnosis almost from the day I received it. Although my initial presenting symptom (a slight limp) was very typical for someone with PPMS, the more I read up on the disease, and interacted with other patients who had it (mostly online), the less convinced I became that the diagnosis was correct. I'd been having strange symptoms for years (antibody-based thyroid disease, possible discoid lupus, a variety of endocrine problems ) and my MRIs showed only two lesions, a tiny one in my brain, and a larger, much more invasive lesion at the base of my brainstem. In addition, my spinal fluid results were always normal, showing no O-bands.

As time went on, my disease continued to behave strangely, initially attacking only my right side. Despite the relentless progression of my disability, my MRI images never changed, and haven't to this day. They still show only those same two non-enhancing lesions, which haven't changed in size or shape since they were first seen over eight years ago. My MRI images from 2003 look exactly like the ones I had taken last month, but compared to 2003, I'm now a physical wreck. I switched neurologists one year after my diagnosis, and my new neuro also initially suspected that I might not have MS. I underwent a comprehensive series of tests and scans trying to uncover an alternate culprit, all to no avail. Everything came back negative, and, since MS is a diagnosis by exclusion, the only candidate left standing was Primary Progressive Multiple Sclerosis. So, I was left with the label "atypical PPMS".

Never one to settle for something I wasn't sure of, especially something as important as the diagnosis of a progressively crippling disease, I set about on a quest for second and third (and fourth) opinions. I visited infectious disease doctors who specialized in Lyme Disease, but very specialized blood tests came back negative. I scheduled an appointment at the Johns Hopkins MS center, in Baltimore, and was examined by Dr. Peter Calabresi, one of the biggest names in MS research. He too found my disease presentation strange, and ordered an extensive series of tests, which included the taking of over 30 vials of blood (yikes!), but these too all came back negative. So, Johns Hopkins also concluded that I have "atypical PPMS". "How atypical does a disease have to be before it's not that disease?", I asked to all who would listen, but never really got a good answer.

My primary neuro, Dr. Saud Sadiq, who is himself a highly regarded physician, occasionally sent me for various tests and poking and prodding, just to check that we hadn't missed something. Always, the results came back negative. I kept in touch with Dr. Calabresi from Johns Hopkins, and two years after he first examined me, I sent him some of my latest MRI images, which looked exactly like my old MRI images, and told him that my disease had progressed significantly. As this seemed extremely strange, he asked that I come down for another examination. After another neurologic workup, Dr. Calabresi concluded that he had strong doubts that I had MS, but couldn't figure out what it was I did have. He suggested I might have a mitochondrial disorder, or Sjogren's disease. Off I went to see one of the most noted mitochondrial disease specialists in the states, who quickly determined that my mitochondria were fine. I had a lip biopsy done looking for Sjogren's disease, but, of course, it came back negative…

It was then that I learned of the study being done at the NIH, which cast a wide net looking for MS patients to examine, trying to find a sizable pool of candidates that the NIH researchers could be confident had Clinically Definite Multiple Sclerosis for use in future studies. At first they were reticent to accept me into the study, as they generally weren't taking patients more than a 2 hours drive from their facility. New York City is about five hours from the NIH campus in Bethesda, Maryland, just outside of Washington DC. When I sent them the details of my case, though, the staff became intrigued, and asked me to join the study. In all, I made four trips to Bethesda, and went through every test the NIH Neuroimmunology team thought was appropriate. At first, they too labeled me "atypical PPMS", but in the end, they decided that I most likely do not have MS, as I certainly didn't fit any of the existing diagnostic criteria. They could not come up with a suitable alternate diagnosis, though, leaving me as something of a medical mystery (click here for a WK post I made about this at the time).

Interestingly, the NIH did raise the possibility that my disease could be ischemic in nature, meaning that it might have something to do with my circulatory system. So, I pursued CCSVI treatment, which did show an atypical blockage of my right internal jugular vein. I hate that word, atypical. Instead of the blockage being inside the vein, as is typical and usually caused by a valve problem, stenosis of the vein wall, or an anomalous membrane, my blockage appears to be caused by a muscle outside of the vein pinching it partially closed. Balloon angioplasty couldn't open this blockage, and the use of a stent would be quite dangerous, because the pressure put on it by the muscle pressing on my vein would lead to a high likelihood of stent fracture. I hope to undergo a second procedure some time in the next several months, to look for other blockages and see if there might be a way to address the atypical (ugh) blockage already found.

My primary neurologist says he still can't rule out a highly atypical case of PPMS, though he acknowledges my case is quite odd. Since MS is a diagnosis by exclusion, and we've been able to exclude practically every other possible cause for my condition, I suppose "atypical PPMS" it is. So, I still self identify as an MS patient.

Whatever you choose to call my disease, it's giving me a good ass whuppin'. My neuro and I (okay, maybe just I) have come to an understanding about the label, though: In my case, PPMS stands for the Peculiar Paralysis of Marc Stecker.

How atypical…

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Sunday, February 20, 2011

CCSVI Video: Interview with Dr. Paolo Zamboni and Dr. Jack Burks

Sorry that things have been quiet here on Wheelchair Kamikaze for the last week or so, but I've been battling a bit of a bug. I hope you'll enjoy the following tasty tidbit of CCSVI information…

Here's another video sponsored by the CCSVI Alliance (click here), and edited by yours truly. It features an interview with the "father of CCSVI", Dr. Paolo Zamboni, and Dr. Jack Burks, an MS Neurologist who is the Medical Director of the Multiple Sclerosis Association of America. The interview was recorded on 01/17/11 in Miami Beach, Florida, at the International Symposium for Endovascular Therapy. Conducted by Sharon Richardson, the President of the CCSVI Alliance, the interview features Dr. Zamboni in person, and Dr. Burks joining via audio teleconference.

One of the biggest hurdles facing CCSVI researchers has been the reluctance of neurologists to get behind CCSVI trials, but this situation now seems to be shifting, and hopefully some much-needed interdisciplinary cooperation will be forthcoming. As is illustrated by the discussion in this video, CCSVI research is in its early infancy, and we've only scratched the surface on what needs to be learned. Momentum is building, though, and the next 6-12 months should bring much revealing data, as a host of trial information is scheduled to become available. Not soon enough for patients suffering from MS, I know, but we are getting there, slowly but surely.

And now, on to our featured presentation…

Wednesday, February 16, 2011

Thank You!

award_lrThanks to your votes, Wheelchair Kamikaze has won medGadget.com's 2010 Best Patient Blog award (click here). WK also won the award in 2009, which proves one thing beyond any doubt: medGadget must have some kind of serious worm or virus infecting their vote counting computers.

All jokes aside, I am extremely grateful for the support readers have given this blog, not only by voting for it in the medGadget contest, but by commenting on the observations and information I post, introducing the blog to friends and family, and reaching out to me through e-mail. I'm genuinely sorry if it sometimes takes me a while to return those e-mails or to follow-up on the comments left on my posts, but do know that I read each and every one, and try my best to keep current with my correspondence. Unfortunately, the realities of having MS sometimes conspire to keep me less productive than I'd like to be.

While I am extremely proud to have won the medGadget award, the blog that took second place,"Brass and Ivory" (click here), and the person who writes it, Lisa Emrich, are equally deserving of accolades. Lisa is a fellow MS patient who has long championed the cause of MS patient activism, and has been a driving force in creating a cohesive community of Multiple Sclerosis bloggers. While I believe it speaks to the quality of both blogs, in a way it's unfortunate that two MS blogs were nominated for the award, for as a patient population, we need to speak in one voice, demanding something far better than the status quo when it comes to the research and treatment of MS. Blogs like Wheelchair Kamikaze and Brass and Ivory should not be perceived as being in competition with one another, but as complementing each other in the mutual fight against MS and an MS establishment that at times appears far too willing to settle for a paradigm in which treatment is good enough.

The clout of the Internet has forced some fundamental changes upon the doctor-patient relationship, as technology has allowed patients access to information that had, until recently, been held strictly in the province of medical professionals. A multitude of blogs and forums have allowed MS patients to educate themselves and each other, to share experiences and opinions that have enabled the MS population to become a powerful force for the advocacy of new and better treatment options, and to intelligently participate in treatment choices that had in the past been made for them.

As the controversy surrounding CCSVI illustrates, the voice of patients can no longer be ignored. When the MS establishment tried to dismiss CCSVI outright, a virtual patient revolt made that same establishment not only take notice but take action, in the form of serious scientific trials designed to investigate Dr. Zamboni's theory. Although these trials might not be to the exact specifications that patients desired, valuable information will be gleaned from them. Furthermore, the force of patient momentum has set into motion events that have led to increasing treatment options and the interest of scientists worldwide. We will get our answers soon enough.

At the very least, patient outcry has forced medicine to look beyond the autoimmune theory and the hideously expensive drugs designed to address it (and, more to the point, to reap tremendous profit for those who manufacture them), and to, perhaps for the first time in decades, scrutinize Multiple Sclerosis with fresh eyes. While the current crop of drugs can improve the quality of life for a portion of the MS population, they do nothing to address the underlying cause of the disease, and it should now be clear to MS researchers and physicians that this is simply not sufficient.

As patients, we must demand that research into the true cause of the disease, research that could eventually lead to a cure, be undertaken with all haste and vigor, corporate profits be damned. We are thankful for the imperfect relief that medical science has thus far brought to some of our MS brothers and sisters, but relief falls far short of the goal. In one voice, MS patients must stand up and shout, "Enough! Treatment is not an endpoint; we will accept nothing short of a cure!"

And when that cure is finally found, MS blogs, forums, and patients alike will be able to hail the greatest victory of all, a victory in which we all will have proudly participated.

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Friday, February 11, 2011


Supreme box camera
Image by al_dekleine via Flickr

I've found that Multiple Sclerosis can become an all-consuming obsession to those suffering from it. Or, to be more precise, to this person suffering from it. Between coping with the marching progression of the disease itself, keeping up with doctor’s appointments and phone consultations, dealing with insurance companies and disability issues, searching for and reading the latest and greatest in MS research news, and tracking the ever-growing conflict being waged over CCSVI, MS can commandeer not only your body and your mind, but your time as well. I'm always preaching about not letting MS define you, and I thought I'd made a pretty good effort at avoiding that trap, but it occurs to me that the pile of unanswered e-mails, the growing number of phone calls that need to be returned, the stack of books and magazines I'm always just about to get to, and the dozens of unwatched shows on my DVR (almost all about archaeology, World War II, mythical creatures, UFOs, or quantum physics) would loudly argue otherwise.

Sometimes it's imperative to just tear yourself away from the addictive gravity of the MS universe, and lose yourself in something else. Family, friends, and loved ones are always a nice distraction (I'm making a crass understatement here), and the football Giants and baseball Red Sox deserve rapt attention. I also have one other passion that I can get entirely immersed in, and it's something that Multiple Sclerosis stole from me, but then, completely unexpectedly, gave back.

Before getting sick, I spent a lot of time on photography. I caught the photo bug early in my teenage years, and then later got a degree in Film. That degree led to a career in television and video production, and when I started out in "the biz" I could very often be found with my eye pressed hard against the viewfinder of a pro video camera, shooting all kinds of cool stuff. I wound up taking video from a sensational variety of flying machines, including hot-air balloons, the Goodyear blimp (three times!), police helicopters, tiny airplanes, and even once from a vintage World War II B-17 bomber. I shot minor-league baseball games and alligators in the Everglades. As my career advanced, I moved from cameraman to video editor to producer, playing with and manipulating images all along the way. Eventually, though, I wound up being a boss, and by necessity dealt more with clients and the good people working in my department than with the images themselves.

To make up for the lack of picture taking and making in my professional life, I went back to snapping away in my private life. This was right around the time when digital photography started to really take hold, and, unlike when I was a kid, when cameras used film, which meant relying on photo processors and darkrooms, suddenly you could do everything photographic all by yourself. The magic of Photoshop puts an entire darkroom in your computer, right at your fingertips. The camera became my constant companion, and all of those years spent looking at and working with images professionally left me with a pretty good eye. I won a few online photo contests, and happily became an active amateur photographer. I've always been drawn to the past, and even in the digital age I found myself becoming fascinated with antique cameras that use good old fashioned film, and with cheap plastic toy cameras that make images that feel like they were snatched from a dream.

Here are a few photos I took back in my healthy days. The square ones were taken with toy and/or vintage cameras. Click each thumbnail for a larger image:

And then I got sick. A slight limp in my right leg soon evolved into weakness in my entire right side, which is quite inconvenient for a right-handed person. To my utter dismay, within only a few years I could no longer hold a camera to my eye, or push a shutter button. MS had stolen photography from me, and in the early years of my disease this was just about the greatest loss the disease meted out. I could still work, could still walk (with increasing difficulty), and, with adjustments, could still live a semblance of my old life. I even learned how to use chopsticks left-handed. But, although I tried, taking photos soon proved to be impossible. Attempting to operate the controls of a camera while framing a shot one-handed was extremely difficult, especially since that one hand was very often frantically reaching for something to grab, and eventually was needed to hold a cane.

Thanks to the aggressiveness of my disease, a shiny new set of wheels soon became part of my life. Not the Porsche roadster I'd always dreamed of, but a Quantum Q6000Z power wheelchair. After some initial trepidation, I became quite fond of the electric beast, which suddenly expanded the size of my world from my 850 ft.² apartment to the 20 or so miles the chair will go until the batteries give out. I know it's almost verboten to say, but I actually found driving the thing to be, well, fun. I could zoom past pedestrians on city streets, explore the many nooks and crannies of Central Park, and cruise along the trail next to the Hudson. Pretty good, and a big improvement over the pathetic few painful steps I had been reduced to.

My wife Karen soon started suggesting that I figure out a way to rig a camera up to the chair, so that I could start taking pictures again. Being grumpy and contrarian, I always muttered one excuse or another about why such a scheme would never work. I think I was afraid that even if I could figure out how to secure a camera to the chair, the results would suck, and that would make me feel worse than not ever having tried, proving that despite my best efforts I was somehow diminished. Still, Karen kept up the pressure, and I finally gave her the go-ahead to get me the required equipment for Christmas (click here to see set up). After a few test runs, I started noticing that the results weren't all that bad. They were somehow different than my old shots, which were more off-the-cuff and improvisational, but shooting from the chair required me to work within a set of some pretty stringent restrictions, and doing so forced some creative discipline on me.

Almost inevitably, I think the MS experience also changed the nature of my shots. Certainly not in any conscious way, but I now seem to take photos of that are a little bit more contemplative, and some have a kind of turbulent tranquility to them. More thought is put into each shot, an attempt to inject some beauty into a scarred existence.

Though I got very sick this past September, and was out of action until the beginning of November, I did manage to get to Central Park a few times later in the month to capture some autumn scenes. Here are a few of them, along with a couple that I shot this summer (including one of Karen, who gets full blame for this madness). Hope you like them, I'll be adding some of them to the Wheelchair Kamikaze photo gallery on the left side of the page. Click thumbnail for a larger image:

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Tuesday, February 8, 2011

Seeing Red


Image via Wikipedia
I'm generally a guy who is very slow to anger. I'm relatively even-tempered, and always try to remind myself that triumph and disaster, as Rudyard Kipling said, are both impostors. The heights of triumph and the valleys of disaster are usually short-lived, and to allow either to trick you into believing that yours is a life that will always be lived in splendor or despair is to have a deluded grasp on reality. I once won over $14,000 in the Florida lottery, and I've seen many of my chosen horses fall short by a nose, both literally and metaphorically. It isn't that I haven't allowed myself to experience the sweetness of conquest, or the bitterness of downfall, but I've long tried to keep things in perspective.

Though I was wildly emotional in my youth, with age has come at least a smidgen of wisdom, and I've learned that a dash of Zen detachment can go quite a long way towards keeping yourself sane and your life on a relatively steady course. Being diagnosed with MS has certainly put my studied grasp on my own emotions to the test, but practiced discipline has helped me to make the many mindbending decisions that are thrust upon patients with chronically debilitating diseases.

Still, there is much about having MS that just plain pisses me off. And not just the fact that I have the disease, which all by itself is a real kick in the ass. But there is a veritable potpourri of reasons to be angry that come parceled with the disease, some of which become apparent only after the blinding smoke from the explosive burst of the initial diagnosis clears, and you get down to the business of day-to-day life with your new and unwanted companion.

Let me start with a favorite target of most MS patients, and one that often seems to go out of its way to earn the bile of those it's supposed to be helping: the medical research establishment in general, and more specifically, the entities that fuel and profit from this woefully dysfunctional beast, the big pharmaceutical companies. To cut directly to the chase, why the hell is so much time and money being spent developing drugs and compounds that do nothing to address the still mysterious cause of MS, but in reality only treat what is essentially a symptom of the disease, a broken immune system. Can we throw a few dollars at finding the cause of this freaking monster? The hideously expensive solutions presented to MS patients don't even have the decency to try to pretend that they're fixing the abnormal immune response that is most likely not the primary culprit behind our creeping paralysis. No, the "Disease Modifying Drugs" modulate naughty immune cells, or suppress them, like a perturbed parent swatting a misbehaving child on the backside and then sending them to stand in the corner.

For the privilege of taking these drugs, the best of which only work in about 65% of those using them, MS patients must overlook the long list of side effects that go with them, starting at the benign end with flulike symptoms, and ending more ominously with the possibility of terrifying brain infections and deadly cancers. Yes, these drugs can improve the quality of life of the percentage of patients they do happen to work on, but that's about as good as it gets. They do absolutely nothing, squat, zippo, to actually cure anything. Instead, they turn the patients into pharmaceutical company clients for life, even if those lives may be shortened by the above-mentioned side effects. What these drugs have been spectacularly successful at doing is enriching the pharmaceutical companies that make them, to the tune of billions of dollars a year. Why cure, when you can treat, and mint money at the same time?

When it comes to medical research, our society has its collective head up its ass. We have extensively trained and credentialed brilliant minds working on cures for baldness and erectile dysfunction while cancer patients are dying, MS patients are becoming crippled, Parkinson's patients are losing control of their bodies, diabetics are going blind and losing limbs, and Alzheimer's patients are watching the very essence of who they are slip away. Granted, being chrome domed and limp schlonged may indeed be upsetting, but sorry, Buster, get to the back of the line. Oh, but wait, I keep forgetting that making money is the goal here, and aging men will go deep into hock for a head full of wavy hair and a phallus that will spring to life at the drop of a pill. Let us not forget, there's also the little fact that most of the occupants of the executive offices of the companies funding our medical research machine can count themselves among the chrome domed and limp schlonged. At least we with serious illnesses can rest assured, secure in the knowledge that those in power have their priorities straight. Making money? Check! Growing hair? Check! Stiffening schlongs? Check! Curing horrible illnesses? Well, that one will have to wait ...

I'm also getting increasingly pissed off at MS neurologists these days. I remain convinced that almost all of them genuinely have the best interests of their patients at heart. They're almost unique in the world of medicine as doctors who have never once cured any of their patients. I've been lucky enough to have met and been treated (unsuccessfully) by some of the best in the business, many of whom are quite literally obsessed with finding some way, any way, to find relief for their patients, but nevertheless they somehow can't stop themselves from denigrating the new kid on the block, CCSVI, and actively stand in the way of research that could confirm or disprove this new vascular theory of MS.

Fine, neurologists have reasons to seriously doubt the validity of the hypothesis, some of which even make sense. There certainly are aspects of the CCSVI hypothesis that contradict known MS Pathology. All the more reason, I should think, for the neurologic community to get fully behind CCSVI research. It seems to me that the quickest way to disprove a theory that they're so sure is completely wrong would be to eagerly team up with vascular physicians to design and put into motion quick and effective trials of CCSVI, thereby settling the question once and for all. By obstinately objecting to such trials, neurologists are not only forcing their desperate patients to seek treatment behind their backs, but they're actually perpetuating the life of a treatment modality that they say has no possible chance of having anything to do with Multiple Sclerosis. No chance? Really? Then prove it.

There are scads of willing MS patients and waiting Interventional Radiologists ready to start large-scale treatment trials that would put all questions to bed. If the trials prove that CCSVI is a crock, the neurologists can pat themselves on the back and do a touchdown dance. If, though, trials prove that CCSVI at least plays some part in the MS disease process and treating it can help patients, then they could also do their touchdown dance, because they'd finally have a radical new way to relieve the suffering of those they treat. Believe me, even should CCSVI prove to be THE cause of MS, there will be plenty of us with nervous systems damaged beyond the ability of CCSVI to help to keep neurologists in business for a long, long time.

I've talked to many of the pioneering CCSVI doctors, and almost every one tells me that they've reached out to the neurologic community to find willing partners, only to be rebuffed at every turn. Hey, neurologists, it's time to put on your big boy pants and step up to the plate. Your patients are demanding it.

As my disease has progressed, and I have become increasingly disabled, I've been handed yet more reasons to be angry. Unlike many other wheelchair users, I haven't encountered too many people who have been discourteous or rude, but here the streets are plagued with zombiefied pedestrians completely consumed with their smart phones and PDAs, to the point where they actually walk right into me and my wheelchair.

Now, this is New York City, and most pedestrians aren't going for arduous, time-consuming, miles long hikes. If they're traveling any significant distance at all, they're very likely either getting into a cab, bus, or subway. Those walking the streets are usually going for quick jaunts of no more than 20 minutes, during which time it seems that it's impossible for them to not stay constantly connected to somebody someplace. What on earth could be so important that they can't actually watch where they're going, join the rest of the world for a few minutes, and wait until they've reached their destinations to reconnect? Instead they are compelled to keep talking and texting while blindly placing one foot in front of the other, oblivious to everything around them. I wonder, do they text, "I JUST WALKED INTO A GUY IN A WHEELCHAIR?" If this doesn't stop soon, some of them are going to need to dial 911 and text, "OMG! SOME LUNATIC IN A WHEELCHAIR JUST SHATTERED BOTH OF MY SHIN BONES."

I'm also peeved at all the shops and restaurants in the city that would be wheelchair accessible if not for the single 1 foot step they have in front of their entryways. Can they not replace these little steps with little ramps, so that I could spend some time and money in their establishments? It wouldn't cost much, and my money is just as green as that of the guy with fully functional legs who just walked into me.

So, what to do with all this anger, bitterness, and resentment that can arise not only from Multiple Sclerosis itself but from the frustrations that go along with it? Well, you can let your anger just sit and fester, like the flesh of a pedestrian stuck to the chassis of my wheelchair, or you can turn it into the energy that it takes to fight this damned disease each and every day. Way back when I was a teenager, The Clash sang, "Let fury have the hour, Anger can be power, You know that you can use it." And use it you can, to educate yourself and become your own best advocate, to power the resolve that this disease will not define you, and to not ever give way to despair. Anger is an energy, and turned inward anger can only do damage to those feeling it, but channeled outward and targeted correctly, anger can be the motivation to annoy the bejeezus out of some people who could really use some annoying…

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Thursday, February 3, 2011

CCSVI Video: Conversation with Dr. Dake and Dr. Mehta; Also, Some Shameless Self-Promotion

blog awardOkay, first the shameless self-promotion. Wheelchair Kamikaze has been selected as a finalist for medgadget.com's 2010 "Best Patient Blog" award (click here). In what must've been some kind of clerical error, WK won the award last year (you can see the 2009 Best Patient Blog badge on the left-hand column of this page, if you scroll down). So, if you find this blog to be worthy of such an honor, I'd appreciate your vote. Medgadget has posted a Best Patient Blog voting page (click here), where you can vote for Wheelchair Kamikaze, and see a list of the other finalists. I encourage you to click on the other finalists’ blogs and give them a look. There are some very talented folks contributing really extraordinary work out there…

Update: WK won the vote, and was named Best Patient Weblog for 2010! Thank to all who voted!

Now, back to our regularly scheduled programming…

On November 10, 2010 the Albany Vascular Roundtable presented a symposium entitled "CCSVI and Multiple Sclerosis: Connecting the Dots". Some principal members of the CCSVI Alliance (click here) were on hand, and they videoed an exclusive interview with two leading CCSVI physicians, Dr. Michael Dake and Dr. Manish Mehta, answering questions about CCSVI in general, and expressing their opinions on the proper way to conduct CCSVI clinical trials. As a member of the CCSVI Alliance's Patient Advisory Board, I was happy to edit the piece together, since way back in my pre-MS existence I actually did such things for a living.

The video is packed with fascinating insights and information, and is must-see material for anybody interested in CCSVI. It runs for about 23 min., and was broken into two parts in order to conform to YouTube's file size limits.

And now, for your viewing pleasure, I present Dr. Michael Dake and Dr. Manish Mehta…