Thursday, May 28, 2009

Study: 100% of MS Patients Are Infected with Epstein-Barr Virus

A recently published study found that 100% of its subjects suffering from Multiple Sclerosis were infected with the Epstein-Barr virus. While Epstein-Barr infection is extremely prevalent in the general population (with infection rates upwards of 90%), it is striking that virtually every MS patient looked at carried the virus.

Of course, this does not prove that EBV alone causes Multiple Sclerosis. Since most of the adult population is infected with EBV, and only a very small percentage of those infected develop MS, the virus alone cannot be the sole cause of the disease. More likely, a combination of genetic predisposition, Epstein-Barr infection, and some other trigger, such as vitamin D deficiency, sets off the anomalous immune reaction that is called Multiple Sclerosis.

As a leading epidemiologist said, the study does show that "people who are not infected with EBV do not get MS". The study also found that subjects without MS who had the highest levels of EBV antibodies were at the highest risk of developing MS at some later time.

This topic has come up from time to time on many of the Internet MS forums, and some patients always strongly object, stating that they couldn't be infected with Epstein-Barr virus, because they've never had mono. The fact is that most people who carry EBV are completely unaware that they are infected with the virus. EBV infections can be asymptomatic, or may be mistaken for a cold or flu. Using myself as an example, I have tested positive for EBV, but have never had mononucleosis.

My neurologist, Dr. Big Brain, told me several years ago that every MS patient is infected with EBV. He was right. That’s why I call him Dr. Big Brain.

Sunday, May 24, 2009

The Breath of the Dragon...

Multiple Sclerosis is a thief. It is indiscriminate in its larceny, robbing its victims of both the profound and the trivial. The disease has stolen from me elements that were once the very foundations of my life (my career, a large part of my social life, the expectation that I would one day learn to juggle), and things that by comparison might seem somewhat slight, like the ability to type.

Since my right hand now has about as much strength and dexterity as a latke, typing has become a strictly one-handed affair. I was never that great a typist to begin with, as I was thrown out of my seventh grade typing class after refusing to stop singing "Hey, Hey, We're the Monkees" during class exercises. The instructor just didn't see the wit in my crooning reference to the old adage that if 1000 monkeys typed for 1000 years, one of them would eventually write "Hamlet". So, I was banished from the classroom, and instead of Typing, was given study hall, which allowed me to take a nice little nap in the middle of the day, but did nothing for my ability to use a keyboard.

When MS robbed me of the use of my right hand, it made typing, which had always been an arduous two fingered affair anyway, into a one fingered nightmare. My ability to communicate via the QWERTY keyboard was virtually eliminated, a major handicap in this day of Internet bulletin boards, e-mail, and instant messaging. How then, the astute reader may ask, am I able to compose the drivel that I post to this blog?

The answer comes in the form of an amazing piece of technology, a voice recognition software program called Dragon NaturallySpeaking. This wonder allows me to simply speak my thoughts, and see them magically transcribed onto my computer screen. It's like something out of Harry Potter, but without all of the crazy protesters claiming that it promotes Satan.

Without Dragon, I would have been rendered mute to the world of the Internet, and instead would have been left only to rant at Melvin, the giant Kleenex who is my invisible friend. The program has relieved me entirely of the need to type, and if I were to wake up 100% healthy tomorrow, I'd continue using it.

Admittedly, the software isn't perfect. It is usually remarkably accurate, but it does require the user to enunciate clearly, and to speak in a constant rhythm. For a native New Yorker, whose mumbles are often incoherent to anyone who resides outside of The Big Apple, this requirement is something of a challenge. Still, Dragon NaturallySpeaking manages to understand the vast majority of my utterances. It actually learns a user's speech patterns, and gets more accurate the more it is used. The mistakes it does make are easily corrected, with intuitive commands that allow for the quick editing and replacing of any misrecognized words.

To demonstrate its accuracy, I'll dictate some familiar passages, and leave them unedited. Here goes:

Mary had a Little Lamb, its fleece was white as snow, and everywhere that Mary went, the lamb was sure to go.

Okay, Dragon did well with that one, except for capitalizing little lamb. I don't have any idea why it did that. Let's try another example:

I pledge allegiance to the flag of the United States of America, and to the republic for which it stands, one nation, under God, indivisible, with liberty and justice for all.

Perfect. No mistakes at all. Okay, one more example, I'll try to make this one a little more difficult. Here's the famous soliloquy from "Hamlet" (my old typing teacher be damned):

To be were not to be, that is the question; whether it is nobler in the mind to suffer the slings and arrows of outrageous fortune, or to take arms against a sea of troubles, and by opposing, end them. To die, to sleep, no more; and by a sleep to say we end the heartache and the thousand natural shocks that flesh is heir to. It is a consummation devoutly to be wished.

Okay, a few little mistakes, but really quite good. It garbled the first line, but that could've been the fault of my pronunciation. Incredibly, it got "heir" right. I was expecting it to transcribe "air". The program also replaced "‘tis" with "it is", but that's understandable.’Tis is not used very much this century.

So, there you have it. If, like me, MS or some other malady has affected your ability to type, or even if you just hate typing, you might want to consider Dragon NaturallySpeaking. The program also allows you to use voice commands to navigate software and your computer desktop, but so far I haven't really used those functions too much.

If you do decide to give the Dragon a try, I'd recommend you pick up a quality microphone, as the headset included in the program is pure crap. I'm currently using a Logitech desktop microphone. I previously used an expensive high-quality headset microphone, but the Logitech is much cheaper and seems to work equally well.

Using Dragon NaturallySpeaking doesn't make MS suck any less, but it does allow me to write about how much having MS sucks.

Gotta go, Melvin wants to play Parcheesi (BTW, Dragon got "Parcheesi" right)...

Monday, May 18, 2009

Is MS Actually A Vascular Disease?

A group of researchers in Italy is proposing a revolutionary new theory about Multiple Sclerosis. They’ve offered some compelling evidence that MS is primarily a vascular disease, and that the neurologic damage seen in MS patients has its genesis in blood flow problems within the veins of those patients. They're calling this theory Chronic Cerebrospinal Venous Insufficiency, or CCSVI for short.

The Italian researchers, led by Dr. Paolo Zamboni, imaged the veins leading from the brain and spinal cord of several hundred MS patients, and found that virtually all of them showed evidence of a narrowing or blockage of these vital vascular pathways. Specifically, they found blockages or stenosis in the jugular and/or azygos veins of the MS patients they studied, findings not seen in healthy control subjects or in patients with other vascular or neurolgic conditions.

These researchers theorize that these blockages constrict the flow of blood leaving the central nervous system, causing a reflux of blood back into the brain and/or spine. This reflux leads to edema and inflammation, which in turn leads to an immune response, which then leads to the lesions that are the hallmark of Multiple Sclerosis.

A group of patients who congregate online at have become convinced that there is significant merit to this theory. Here is a link to a thread on that site which contains all of the research behind the CCSVI theory, and discussions pertinent to it. One of these patients managed to contact a highly respected vascular doctor at Stanford University, Dr. Michael Dake,. who looked over the research materials and agreed that there might indeed be something to this radical approach.

Dr. Dake and his colleagues have themselves begun imaging the vascular systems of MS patients, and have found results similar to those of the Italian researchers. The Stanford group has gone so far as to start surgically clearing the blocked veins of MS patients, by placing stents at the sites of the blockages.

The researchers in Italy have also been clearing the blockages that they've found, and plan on holding a news conference announcing their findings and results sometime early this summer.

Needless to say, this theory, and the data behind it, flies in the face of accepted scientific thought about Multiple Sclerosis. I'm not entirely convinced that this hypothesis explains all the complexities and wide range of disease presentations seen in MS patients, but the evidence certainly seems compelling enough to warrant further serious investigation.

Personally, I've never quite bought into the "autoimmune" theory of the disease, and I would welcome the paradigm shift that these new ideas might bring about. It's time for mainstream researchers to start looking beyond accepted MS dogma, which thus far has brought us treatments that are only partially effective, and often highly toxic. Surely, there must be a better approach to treating MS than suppressing the intricately complex human immune system.

There is precedent to this kind of radical shift in ideas about a disease. For decades, gastric ulcers with thought to be caused by diet and stress, until researchers discovered that they are actually caused by a bacteria that can be treated quite successfully with antibiotics. Poking at theories that have been accepted as fact can sometimes lead to startling results.

New! Update on "MS as Vascular Disease", posted 8/28/09.

Update 11/21/09! Canadian television has done a video news report on CCSVI. Click here for the link.

Update 11/30/09! CCSVI: Separating Fact from Fiction. Click here.

Friday, May 15, 2009

That Was Then, This Is Ow...


I say that word more than any 45-year-old man should. I'm also far too often exclaiming ow, youch, yowie, yikes, and an almost infinite number of variations on the theme.

Why, you may ask, am I constantly uttering such guttural expressions of pain? Am I into some kinky alternative lifestyle? After all, MS is not generally a painful condition. Yes, some MS people are plagued with neuropathic pain, but, alas, I'm not one of them.

Instead, I was lucky enough hit the drug side effect jackpot. I developed a condition called Avascular Necrosis from a 10 day course of IV steroids that was given to me in an attempt to slow down my quickly progressing MS. The steroids worked, at least temporarily, and my MS symptoms were knocked back for a time. I recovered some function that had been lost for months.

Unfortunately, about six months later, I started feeling some nagging pain in my left hip and right shoulder. At first I just ignored it, since it seemed insignificant compared to the encroaching weakness and spasticity courtesy of my MS (or whatever it is). But as the pain lingered and began to worsen, I mentioned it to my neuro, who ordered MRIs of my problematic joints. A week later, the doctor called to inform me that I had developed Avascular Necrosis, a progressive disease of the joints that is a rare side effect of intravenous steroids.

Wow. I was floored. I didn’t see that one coming. I kind of felt that I was immune from other horrible diseases once I had been hit with MS. Wasn't there some universal statute of limitations that governed the amount of suck ass conditions one person could be afflicted with?

No, it turns out, there isn't.

Avascular Necrosis is a condition in which the bones in a patient's joints, most often the shoulders and hips, actually start dying. No one is quite sure why this happens, but it's thought that, in rare cases, steroids can permanently cut off the blood supply to these bones, thereby causing them to give up the ghost. Steroids are not the only cause of Avascular Necrosis, though. It can also be caused by chronic alcoholism, injury, and sometimes it manifests for no apparent reason at all. Whatever its cause, AVN is the leading cause of hip replacement in the United States.

As the condition progresses, the dead and dying bones begin to crumble, causing pain that can be quite intense, especially when weight is placed on the affected joints. I've got AVN in both hips and both shoulders. The shoulders aren't too much of a bother, but the hips are a real problem. At this stage of the game, both of my femoral heads have collapsed, and it often feels as if my hip bones have been replaced with red hot razor blades and shards of glass. It's also something of a mind frack to think that I've got dead bones in my body. Ick.

In an otherwise healthy patient, the piss poor state of my hips would have long ago required total hip replacements, but because of the ravages of my neurologic condition, I wouldn't be able to properly rehab from the surgery, so I'm pretty much left to just deal with the "discomfort"of having a jumble of crumbled, dead bone where my hips should be. I've been given powerful anti-inflammatories, and a supply of narcotic painkillers, but neither really do the trick.

The anti-inflammatories (Voltaren) worked at first, but their effects have diminished with time. The painkillers (Percocet) just make me feel dopey, and as my friends and family would quickly attest, I'm dopey enough without them, thank you. It's funny, back in my wild and crazy youth, Percocet one of my favorite recreational "enhancements", but now that I actually need it, I can't stand the effect it has on me. Go figure...

Oddly, the one thing that does ease the pain is occasional shots of cortisone, which is a steroid. It's kind of like taking the hair of the dog that bit you. Steroids cause Avascular Necrosis, and steroids are apparently the only thing that can temporarily relieve the pain of the condition. Unfortunately, cortisone can't be used too often, for fear of worsening the AVN. Damned if you do, damned if you don't...

The combination of weakness, spasticity, and intense pain has made my walking around the apartment quite a noisy affair. It sounds something like this: shuffle (me dragging my right leg), clunk (the sound of my cane on the floor), ouch (me, as the AVN takes a bite out of my hips). Shuffle, clunk, yowie. Shuffle, clunk, youch. Shuffle, clunk, son of a bitch. Shuffle, clunk, holy crap. Shuffle, clunk, mother &%@%!!!. After about five steps, I'm transformed into a one-man parade of shouted profanity.

The Marquis de Sade would be thrilled. Miss Manners, not so much...

Monday, May 11, 2009

Zen, Poker, and Multiple Sclerosis

Back in my healthy days, I found myself drawn to the teachings of Zen. My life was frequently turbulent, and I often felt like the target in a game of "whack a mole". The clarity and serenity that Zen offered seemed quite appealing. I read books on Zen thought, talked to practicing Buddhists, and came to have a pretty good working knowledge of philosophies that are the foundation of Zen practice.

Intellectually, I understood the importance of living in the moment, and could see how vanity and attachment to desire breed misery. In an abstract way, it made sense to me that there are no absolute realities, only those we create by filtering the world through our emotions and opinions. Since, with practice and effort, we can control those emotions and opinions, we should also be able to control our realities, and master our reactions to changing circumstances.

Emotionally, though, it was a different story. Rather than controlling my emotions, my emotions controlled me. I wore my psychic wounds as badges of honor, like a Boy Scout who had just learned how to tie a box knot. Unfortunately, the only thing I’d learned to tie in knots was myself, and, simmering somewhere in the background, I expected some reward for all of the angst that I embraced. I paid Zen lip service, but never truly incorporated its teachings into my daily routine.

And then I was diagnosed with MS. Suddenly I was faced with trouble of an entirely different magnitude. Not with existential angst, not with romantic heartbreak, not with the pain of being human, but with an all too real disease that was literally eating holes in my brain and spinal cord. All of my other worries suddenly seemed quite trivial.

I desperately wanted a do-over. Hey, Universe, I'll trade you my shiny new spinal lesion for a nice dollop of existential angst, what do you say? What? No deal? How about a hole in my brain for a smidgen of heartbreak? Again no? Who are you, that supermodel I once asked out? I demand to speak to your supervisor! Hey, wait a minute... Hello? Hello? How dare you hang up on me! Waiter! There's a fly in my soup! And a hole in my brain! Holy crap!...

Thankfully, the universe had provided me with the one thing I absolutely needed to get through this experience, a kind, gentle, caring wife who has stood beside me through it all...

After the initial shock of the diagnosis started to wear off, I found myself turning to my knowledge of Zen as a matter of survival. MS has turned all of those Zen abstractions into hard realities. Living in the moment? The disease forces you to live in the moment. My healthy past is gone forever, and the progressive nature of MS makes peering into the future quite unsettling... Attachment to desires? Most of what I desired went right into the crapper. Career? Kaput. Wealth? Have you ever seen the dollar figures on a disability check?... Vanity? Finding your spastic ass stuck in a wheelchair will quickly cure you of vanity. Zen values humility. MS supplies plenty of it...

I've played a lot of poker in my time, and I've found that the game can teach lessons that resonate far beyond the poker table. Poker and Zen have much in common; both teach the power of making proper choices, and the importance of practicing emotional control despite ever-changing circumstances.

The law of averages tells us that if a group of poker players play enough hands, they will all eventually be dealt the same proportion of good and bad cards. Logic, then, would dictate that these poker players should all eventually break even, since they'd have all played a similar mix of cards. Of course, this not how things actually work. In the real world, there are players who consistently win, and players who consistently lose. The difference between them is not the hands they are dealt, but how they play them. Winning poker players know that they themselves determine whether they'll be winners or losers. The cards are actually secondary.

Likewise, over the course of a lifetime, we are all dealt a wide variety of circumstances. If happiness and contentment are the "chips" we try to accumulate, those who triumph understand that what determines their own happiness is not the circumstances life hands them, but how they deal with those circumstances. Happiness is not a choice; it's a million choices, made every day. If you choose to label a situation, such as getting MS, as a calamity, or a tragedy, then it will surely be one. On the other hand, if that same situation is reacted to with a mix of wisdom, resolve, and kindness to self, it needn't be an emotional wrecking ball. Certainly, getting such a diagnosis dramatically changes the course of your life. The key then, is to let go of your old road map, and to learn how to best navigate the path you now must follow.

MS is no blessing, but it doesn't have to be a curse, either. It just is, something that happened during a lifetime of somethings that happened . Though I might not have control over what the disease does to me physically, it is within my grasp to control its emotional impact . It's all in how I choose to play the hand that's been dealt.

As Paul Newman said in "Cool Hand Luke", "Sometimes nothing is a real cool hand..."

Friday, May 8, 2009

Will The FDA Kill Adult Stem Cell Medicine?

I usually try to take a humorous approach to the serious issues involved with dealing with chronic illnesses such as multiple sclerosis. This issue is so serious, though, that I'm not finding much funny about it.

A recent news article raises some questions that are of utmost importance to any patient dealing with serious/chronic illness. Although the article is more an opinion piece then straight up journalism, the issues it talks about are vitally important.

In a nutshell, the piece is concerned with the fact that the FDA is currently in the process of deciding whether to classify adult stem cells as prescription medicines, which would thereby give the FDA the right to regulate the way such medicine will be administered. Please keep in mind, we're not talking about embryonic stem cells here, so there are no moral politics involved in this matter. At issue is adult stem cell therapy, which comes with none of the complicated moral questions surrounding embryonic cells. Instead, it's money, scads and scads of dollars, that are at the heart of the issue.

The drug companies (Big Pharma) are lobbying hard to get the FDA to declare stem cells "prescription drugs", thereby giving the drug companies considerable control over this revolutionary medical technology. Stem cells hold the promise of completely changing the face of modern medicine. They are the key to unlocking the human body's own ability to heal and regenerate itself. Stem cells could make the way medicine is currently practiced, with all of its invasive surgeries and use of potentially toxic pharmaceuticals, as obsolete as the medical practices of the 1700s are today.

This all presents a great threat to the pharmaceutical industry. Over the last 50 years, the marketing of pharmaceuticals has become an industry that generates hundreds of billions of dollars each year. Much of this money is generated by drugs used to treat "chronic" illnesses, such as diabetes and multiple sclerosis. Diseases such as these are cash cows for the industry, because patients stricken with them are forced to be consumers of the industry's products for life. Medicine is well on the way to transforming previously fatal diseases, such as some forms of cancer and AIDS, into chronic illnesses, creating yet more lifelong consumers of expensive pharmaceutical therapies.

The success of stem cells would mean that many of the medicines used to treat chronic illnesses would be rendered instantly obsolete. Big Pharma stands to lose billions and billions of dollars if the promise of stem cells turns out to be even only partially fulfilled.

It's important to remember that all of the companies that make up "Big Pharma" are public companies, and as such are by law beholden to their stockholders, not to the patients that take their products. Their primary mandate as public companies is not to benefit mankind through the creation of medical miracles, but to earn ever increasing amounts of money.

While on the face of it this would seem to be all well and good, as the best way for pharmaceutical companies to make money is to create effective drugs, there is actually a basic conflict to this equation. Turning potentially fatal or disabling diseases into manageable chronic illnesses generates huge amounts of wealth, but curing those same illnesses puts an end to the cash flow. Thus, we see great amounts of effort and capital going into researching drugs that treat illnesses, but not much going into research that might actually cure them.

I'm not suggesting that there is some evil conspiracy afoot, or that there is a cabal of miserly old men sitting in an opulent conference room somewhere, casually devouring infants as they plot to make untold billions of dollars by ensuring that illnesses are never cured. If that were the case, the solution would be easy, simply eradicate that opulent conference room and the baby eaters in it, and proceed on to the cures. Instead, the problem is much more insidious.

Over 70% of medical research in the United States is funded by the pharmaceutical companies. As stated before, the primary mandate of these companies is to make money, which they do best by discovering "blockbuster" drugs that will generate billions of dollars. Therefore, pharmaceutical research money is funneled towards projects that hold the promise of just such discoveries.

Research scientists, as well-meaning as they might be, still must rely on grants from pharmaceutical companies to fund their research (and therefore pay their rent, feed their families, and advance their careers), and thus are naturally inclined to conduct research that will attract pharmaceutical company dollars. In a way, it's a vicious cycle; pharmaceutical companies tend to fund only those projects which they think have the biggest profit potential, thereby influencing researchers and scientists, who, after all, need to make a living, to embark upon research that is likely to have the profit-making potential that the drug companies are looking for.

Stem cells threaten to throw this whole system on its ear. The process of extracting stem cells from a patient (usually from bone marrow or fat tissue) can be done in a doctor's office, and the processing of such cells can take place in laboratories outside the purview of the pharmaceutical companies. These procedures are not so complicated that the industrial might of the pharmaceutical industry is needed to make them a reality. They are more on the scale of fertility treatments, which are administered in local clinics by local doctors without the "help" of Big Pharma.

If the pharmaceutical industry is successful in its lobbying efforts to get the FDA to declare stem cells "prescription drugs", the power of stem cells will be ripped from the hands of physicians and placed in the hands of public companies whose profit-making mandate could actually lead to the suppression of potentially revolutionary stem cell therapies. This would have tragic consequences for the millions of patients that could potentially benefit from stem cell treatments.

Laboratory models and animal testing have shown that these treatments are extremely viable, and many could likely be ready to treat human patients within the next five years, if left in the hands of physicians and researchers. If, instead, stem cells are declared "prescription drugs", these therapies might not see the light of day for decades.

If you or a loved one suffers from a chronic illness, it is time for your voice to be heard. Call your senators, call your congressman, write letters to your newspapers. Demand that your friends and family do the same. Climb up on soapboxes and scream from mountaintops. Bang drums, put on face paint, and go on the warpath. Treat this issue as if your very life depends on it, because it does...

Monday, May 4, 2009

New Video! Sunday in the Park with a Kamikaze...

Hey, folks, here's my latest Wheelchair Kamikaze video. It's a kamikaze's eye view of an afternoon in Central Park, one of the best places in the world. I hope everybody has as much fun watching it as I had making it...

Sunday, May 3, 2009

The Kamikaze Camera Set Up

Several people have asked about my wheelchair and camera rig, so here is all the pertinent info.

My wheelchair is a Quantum Rehab Q6000Z, made by Pride Mobility. As you can tell from the videos, the chair is quite rugged, and I have the "high-speed package" installed, which brings the top speed to 8.5 mph, up from the normal top speed of 6.5 mph.

The camera I'm using is a Canon SX10 IS. It's a still camera that shoots "good enough" videos. This camera allows me to take both still photographs and videos, thereby killing two birds with one stone. As you can see from the photos, below, when the camera is mounted to the wheelchair it is not at eye level, so it was important to get a camera that had a flip out viewscreen, which this Canon does.. Without this kind of a flexible screen, it would be almost impossible for me to frame shots. The camera also has an extremely long zoom range (20X), which is important because of the various restrictions that shooting from a wheelchair presents.

The camera is mounted to the chair via a Gorillapod SLR flexible tripod, on which I've mounted a Manfrotto 482 micro tripod head. The Gorillapod does not have a flexible head, meaning that the camera would be stuck in one position without the additional tripod head. The little Manfrotto head fixes that problem.

Here are some photos of the rig. Please forgive the image quality, I had to use my crappy cell phone camera to take them. Click for larger images...

It would be great if more wheelchair folks started doing some videos from their chairs. I'd be happy to post links to their work here at Wheelchair Kamikaze...