Update on "MS as Vascular Disease"

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A few months ago, I published a post about a radical new theory regarding Multiple Sclerosis, called the "Cerebrospinal Venous Insufficiency" theory, or CCSVI for short. I thought that now might be a good time to provide an update.

Just to review, several years ago researchers in Italy started looking at the vascular systems of MS patients, specifically by imaging the veins that are directly related to the central nervous system (the jugular and azygous veins). Incredibly, they found that in nearly all of the patients they studied there were blockages or abnormal narrowing of these very important vascular pathways. The researchers theorized that the vascular blockages they were finding could cause a reflux of blood back into the central nervous system, which in turn could lead to inflammation and edema, and eventually to a breakdown in the blood brain barrier, and thus be responsible for the damage seen in Multiple Sclerosis. About two years ago, the doctor leading this research, Dr. Paolo Zamboni, started performing modified balloon angioplasties on these areas of abnormality.

An interventional radiologist at Stanford University, Dr. Michael Dake, became interested in this research after it was brought to his attention by the activist wife of an MS patient. Dr. Dake traveled to Europe to meet Dr. Zamboni, and upon his return started doing some investigations of his own. He too found serious vascular abnormalities in nearly all of the MS patients he imaged. Based on these imaging studies, approximately 4 months ago Dr. Dake started performing endovascular surgery on these patients, placing stents in blocked veins to open up the areas of abnormality that he found.

To date, Dr. Dake has performed surgery on about 35 patients, most of whom have reported positive results as a result of the surgery. Although most of the patients who have undergone the procedure were not severely disabled due to MS, they all suffered from the usual array of MS symptoms, including cognitive dysfunction, heat intolerance, and severe fatigue. Many also suffered from varying degrees of motor and sensory dysfunction. Almost all have reported marked improvements in these areas.

Tragically, one of the patients who underwent the procedure died of a massive cerebral hemorrhage soon after, but the consensus is that the patient’s stroke was not directly related to the endovascular surgery that was performed. The blood thinning medication that was given postsurgery did contribute to the severity of this terrible event, but was not deemed to be a causative factor.

Dr. Zamboni recently published a summary outlining the results he's seen on the patients who were treated with his endovascular procedure, which he calls the "Liberation Procedure". In the 51 RRMS patients treated with the procedure, Dr. Zamboni claims a fourfold decrease in relapses. Furthermore, Dr. Zamboni performed the procedure on 18 patients who were suffering from acute relapses, and after surgery these patients recovered from their relapses in time periods ranging from four hours to four days. Dr. Zamboni cites this as "the best evidence that venous obstructions play a causative role in the complex pathogenesis of Multiple Sclerosis".

Dr. Zamboni and his team have organized a conference on "Venous Function and Multiple Sclerosis", to be held in Bologna, Italy on September 8 of this year. Several prominent US neurologists specializing in MS are expected to participate.

It's important to note that Dr. Zamboni's surgical results have been self-reported, and not subject to peer review. Additionally, no MRI imaging studies were done on his patients after they underwent the "Liberation Procedure", which would have been very valuable in assessing the impact the procedure had on the central nervous system lesions of those who underwent it.

Dr. Dake is planning on starting his own clinical study in September, 2009, which is expected to be limited to RRMS patients.

All of this information is extremely fascinating, and may offer a brand-new approach to understanding and treating Multiple Sclerosis. It's very important to keep in mind, though, that nothing has yet been proven, and that all of the results so far reported, as positive as they've been, have only come from two sources (Dr. Zamboni, and Dr. Marian Simka, who has done research on CCSVI in Poland). Scientific discipline requires that these results be replicated by independent researchers before anything definitive can be stated about this theory, and I expect that several groups will be attempting to do just that in the near future.

I personally find this research to be quite exciting, although I am maintaining a healthy skepticism regarding it. In my 6+ years as an MS patient, I've seen many such "theories du jour" generate tremendous enthusiasm, only to be disproven by the greater scientific community. In this case, though, my gut tells me that there might be something to this. I'm quite sure that this theory can't explain all cases of MS, but it does seem compelling enough to suggest that, at the very least, there is a subset of patients for whom the root cause of MS may not be neurologic or autoimmune, but vascular.

Research into the causes and treatments of Multiple Sclerosis has fallen almost exclusively into the realm of the neurology and neuroimmunology communities for the last 30 or so years. Though some impressive advances have been made, the disease has proven to be quite confounding when looked at from these perspectives. CCSVI offers a fresh approach at understanding the disease, and furthermore, offers the hope of some straightforward methods of treating it.

This research may turn out to be nothing but a flash in the pan, but there is the chance that it could revolutionize our understanding of Multiple Sclerosis. For this reason, I recommend that all MS patients pay close attention as the CCSVI story unfolds...

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

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

Warning: Blind Curves Ahead

Receiving a diagnosis of MS, or any serious illness, is a reality shattering event. Despite the initial wave of fear, confusion, and consternation, there is one thing the receiver of such news knows innately; life as they know it will very likely never again be the same. Whether the disease eventually takes a mild course, leaving a person relatively intact for an extended length of time, or a more aggressive path, as in my case, landing its victim in a wheelchair within five years, life's future trajectory has been fundamentally altered. If not by the ravages of the disease itself, a patient's reality will be warped by the sudden realization of their absolute vulnerability.

How to deal with this sudden detour is up to the individual, and each person's reactions and coping mechanisms are as different as the ways in which MS can present itself. Some patients go into complete denial, and attempt to live life as if nothing has changed. Others shut down completely, unable to wrap their minds around their new, unfortunate, reality. Reading books, talking to doctors, and chatting on the Internet can only go so far. Ultimately, each individual must make his own peace with the disease. Truthfully, I'm not sure that peace is even the right word. Truce, maybe? Each person must come to a truce with their new reality, must reach an armistice with their illness.

Thing is, even without a diagnosis of MS, no person knows what the future holds. We live our lives with blinders on, blithely going about our routines as if those routines were written in stone, stable and secure and steadfast. Almost inevitably, something comes along to reveal that the underpinnings of our existence are not constructed of granite, but of gossamer. The stability of everyday life is an illusion for us all, healthy or not, and can be shattered in an instant. The loss of a job, a betrayal, an illness or accident, or even a simple lapse in judgment can forever consign all that was previously taken for granted to the scrap heap of what used to be.

When I was first diagnosed, I was working at one of the major TV/video/music production facilities here in New York City. The building was filled with folks who were among the world's best at their highly competitive jobs. Two of the people I was most friendly with there were named David and Bob. David was a flat-out genius, probably the smartest person I've ever met, who was paid a very nice living for simply being David. He was an innovator who helped bring about the digital age of recorded music, and was so well thought of that he was the go to guy when the industry's other big brains had problems that they couldn't solve. Bob was a gentle giant of a man, and as chief engineer of one of the world's foremost production facilities, he was no slouch in the brains department either. In an industry filled with tremendous egos, Bob was humble and grounded, an island of stability in an environment that could often turn into a maelstrom of emotional histrionics.

Upon hearing of my diagnosis, both of my friends were visibly saddened, and through the fusillade of "sorry to hear thats" that came at me from every direction, their compassion was palpable, and comforting. They genuinely felt sorry for me, but I knew from my own experience in dealing with other people's bad news that there was an element of "thank God it isn't me" mixed in with their compassion. It's only natural, as hearing of someone else's misfortune serves as an unwelcome reminder of our own vulnerability, a reminder that we quickly cast out like a container of soured milk. In the reality show of life, even the best of us feels thankful that it wasn't me who was voted off the program.

About three years after I was diagnosed, my friend David suffered a massive coronary after having dinner with his elderly mother. He simply got up from the dinner table, fell over, and that was that. Soon after, Bob was hit with a mysterious illness, and he wound up going on disability a month or two before I did. Through numerous phone conversations, we helped each other wind our way through the labyrinthine process and paperwork of applying for Social Security and long-term disability. Tragically, Bob's mysterious illness turned out to be a rare form of leukemia, and he passed away a little over a year ago. Even now, writing that sentence brings with it a sting of grief.

The point of all of this gloom and doom is that nobody knows what's coming. Life is a road made up of nothing but blind curves. Healthy or not, we must all constantly try to make the most of the present moment. The past is gone for good, and the future is unknowable. All we have is now, and even if this now is not what you once imagined it would be, it is still your most precious possession, because you will never have another one.

Those of us who have suffered loss after loss because of multiple sclerosis must concentrate on that which we still have, and not lose ourselves in all that's been taken from us. I can't use my right arm and leg , but I can use my left. I can choose to grimly lament the loss of what had been my dominant side , or I can try to do the best I can with the parts of me that still work. It's all a choice, and the power and grandeur of the human mind is that it can create its own reality. Being stuck with a miserable disease does not relegate one to being miserable. Without making an effort, the misery of MS is always there to sink down into. Avoiding it takes conscious action, the mental discipline to mindfully take control of your own emotional well-being.

This is not to suggest that one walk around brainlessly smiling like an overly medicated asylum inmate. A large part of the ability to cope with a disease like MS is acknowledging how much having the disease sucks, and then deciding that you will find a measure of contentment in spite of it. It's an effort that must be exerted each and every moment of each and every day, but as with all exercises, with time it becomes easier, and habitual.

My friends David and Bob both felt sorry for me, never expecting that within a handful of years I'd be the last of the three of us to still grace the planet. My life is farther from perfect than I ever expected it could be, but I still have life, and enough ability left to overcome my disabilities. This might not always be the case, but right now, at this moment, it is. Tomorrow, or next week, or next year? Who knows? I can try to plan for the future, but I can only live it when it becomes the now.

Despite multiple sclerosis, we are in the very same boat as our healthy friends and family, trying mightily to navigate uncharted waters with an imaginary map. Rest assured that there are rocks and icebergs and maybe even sea serpents ahead, but the only damage they can truly do to your essence is that which you let them.

Info on Wheelchairs

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Many people have asked me for information about wheelchairs, figuring that since I call myself the Wheelchair Kamikaze, I must know something. Truth is, the only wheelchair I really know much about is mine, a Quantum Q6000Z, and really, I mostly just know how to drive that chair like a lunatic.

The best resource I've found on the Internet for reliable information and opinions on all things wheelchair is the Wheelchair Junkie website, which is run by Mark E. Smith, one of the higher-ups at Pride Mobility, who is a power wheelchair user himself. Although he’s an employee of Pride, his site contains useful information that pertains to wheelchairs of any make and model. One of the most valuable features of the site is the message board, which is populated with lots of very friendly and very knowledgeable folks who are more than willing to offer their opinions and expertise to those seeking knowledge and camaraderie. The "Ask Mark" forum allows message board members to ask questions directly to Mark E. Smith, who knows just about everything about wheelchairs that there is to know.

Now, if you want to ask me about, say, what it's like getting into a head-on collision at full speed with a parking meter while driving a wheelchair, go right ahead. For all other inquiries, though, I recommend checking out Wheelchair Junkie.

Pleased to Meet Me

Image by melolou via Flickr

MS has wrought an almost incalculable number of extreme changes on my life. Physically, the changes are obvious. Right arm and right leg on the fritz, and I quite often have a wheelchair sprouting from my backside. Changes like that are hard to miss. More difficult to discern are the internal transformations, the changes in mind and spirit.

I'm quite lucky in that MS has not dramatically damaged my cognitive abilities. Many MS patients suffer terribly from the deterioration of their memory and their ability to think. So far, at least, my faculties seem to be relatively intact. My short-term memory isn't what it used to be, but that may be more a function of age than disease. If anything, dealing with multiple sclerosis may have actually heightened my senses of thoughtful perception, and has certainly enlarged my capacity to feel empathy for all of those who struggle to simply make it through the day, sick or not.

I've lately come to realize that MS has not only altered my perception of the world around me, but also of the world within me. It's changed the way I think about myself, in some unexpected ways.

When healthy, I suffered from the common delusion of believing in the limitless possibilities of the future. Although my rational mind understood that my youthful dreams of fame and fortune were not likely to be fulfilled, there was still a part of me that half expected some huge stroke of good luck to dramatically alter the course of my life, to suddenly elevate me into the stratosphere of society. Surely, there was still the chance that I might find myself sitting next to Jay Leno, chatting about my recent Oscar triumph. Nevermind that I hadn't acted in anything since my sixth grade production of "The Sound of Music", and I was much more likely to be directing traffic than a film anytime soon. In America, anything is possible.

Well, MS pretty much doused those flames. These days, my fantasies have less to do with winning Oscars than with taking a stroll around the block, though the chances of either are probably equally astronomical. Still, I find myself dealing with the world in a much more rational way. Rather than feeling resentful that my grand imaginary life was being thwarted by the realities of my everyday existence, I now find myself grateful for the simpler pleasures; lunch with a close friend, a nice day for taking photos, or even just a few hours when the pain in my hips mysteriously subsides. Here's a universal truth, brought to me courtesy of Multiple Sclerosis: The biggest blessing on earth is a quiet night at home spent with people that you love.

MS has stripped away the many trappings of life that had become central to my self identity. High profile job in a "glamour" industry? Gone with the wind... Sexy little sports car? Couldn't even get into one these days... Fashionable clothes and fancy shoes? Ha! Putting on my socks is now a painful exercise in acrobatics, and I could just as easily use buttons and shoelaces as I could split the atom... All of those externals that once so dominated my definition of self are now mere memories, and in their place I've gradually come to know a different me, a me that resembles one that I knew a long time ago, back when I was a child unencumbered by the accouterments of adulthood.

Despite the complexities of being disabled, life in some ways is now a much more simple affair than it was when I was healthy. Absent of the concerns of career and social climbing, I find myself free to pursue my whims and desires in a kind of newfound innocence. No longer confined by the boundaries of the workaday world, I can be as eccentric as I want to be.

I've always felt like something of a living anachronism, a man born in the wrong time. Well, if I want to spend my days in 1935, now there's nothing to stop me. So here I sit, listening to The Mills Brothers or The Ink Spots, and I never leave the house without wearing a fedora, preferably at a rakish angle. After all, what sets off a wheelchair in the summer better than a nice Panama hat? I can watch baseball to my hearts content, unencumbered by worries about that big project that is due, or tomorrow's budget meetings. I can spend my days making videos, taking photos, and writing, a situation that I literally used to dream of. Naturally, those dreams never included a wheelchair mounted camera, or writing about my experiences dealing with a dread disease, but, as my father used to tell me, if you want to dance you've got to pay the band.

Of course, there are eternal worries about my illness, but somehow, these are different than the ever-changing concerns I had during my healthy life. These new anxieties are immutable, unbending, and worn like a second skin. Unlike most of the problems I encountered before MS, there is really nothing tangible I can do about my illness, so the all-pervading anxiety it produces, while wearisome, doesn't usually overwhelm the mind. I do my due diligence, fastidiously keeping up with all the latest research, and aggressively pursuing my medical options, but beyond that, there is very little control I can possibly have over what MS is doing to my body on a day to day basis. As hard as it was to come to terms with that reality, the only thing left is to let it be.

I've found this new me to be much more honest with myself, much less likely to put up with dishonesty in others (especially if they're being dishonest with themselves), and completely disinclined to be convinced to do things out of social obligation. I've learned that saying no is not an act of selfishness when it's an act of self-preservation. Often times I simply don't feel well enough to live up to the expectations that some might have of me. I'm sorry to disappoint them, but if catering to others means that I'll spend the next three days in bed, it's just not going to happen. With the love and support of my very caring (and very indulgent) wife, I'm free to pursue interests and inclinations that had long lain dormant simply because life as a working adult had left no time for them.

Make no mistake about it, having MS sucks in every way it possibly can suck, and I will never be one of those patients who claims that "I have MS, but MS doesn't have me". MS most certainly does have me, by the balls (sorry, ladies). But, in a sense, MS has given me the freedom that most human beings lose upon entering grade school. The price for that freedom has been dear, and I would never have willingly paid it, but freedom, whatever the cost, bears with it an inherent sweetness. I've learned that it's okay to savor some of that sweetness, despite the horror and dismay of having progressive MS. The disease has allowed me the opportunity to rediscover myself, and, I must say, it's been an unexpected pleasure to meet me...

Great Webcast: Understanding Primary Progressive MS

Primary Progressive MS (PPMS) is an often poorly understood disease, even by those suffering from it. PPMS afflicts only about 10 to 15% of the MS population, and differs significantly from other forms of the disease. In visiting many of the Internet MS forums, I've found that it's quite common to see much confusion and misinformation about this form of the disease being passed from patient to patient, including such fallacies as "most people with PPMS are dead within five years of diagnosis", "PPMS inevitably leaves its victims bedbound vegetables", and "PPMS leads to the compulsion to drive wheelchairs crazy fast down crowded city streets". Okay, I made that last one up, but there really is a lot of confusion about PPMS.

The National Multiple Sclerosis Society has just released a series of three videos covering various aspects of PPMS, and I found them to be surprisingly honest and informative. Most importantly, the videos dispense with many of the old notions about the disease, and touch on some of the latest developments in the research and understanding of this very challenging form of MS. In my opinion, these videos are so useful that they should be viewed by anybody dealing with any form of MS, simply because they contain valuable information that crosses the boundaries of disease type.

The first video, "Understanding Primary Progressive MS", talks about the substantial differences between PPMS and the other forms of the disease (RRMS, and SPMS, and PRMS), and discusses some of the challenges involved with correctly diagnosing PPMS. This video features Dr. John Richert who is the Ex. VP, of Research & Clinical Programs at the NMSS, being interviewed by a woman who looks very much like somebody I dated about 14 years ago. I wonder whatever happened to Jill?

The second video, "Strategies, Research, and Hope for Primary Progressive MS", is to me the most valuable of the three videos. In it, Dr. Richert clearly makes the point that an "autoimmune" response is not the primary driver of the PPMS disease process, and thus none of the current crop of immunosuppressive or immuno modulating drugs are useful in treating it. He also states that this is also true for SPMS, and that there is more going on in the RRMS disease process than was previously thought, as well.

Hallelujah! I've been saying for years now that a misguided immune system is only a symptom of MS, and not the cause of the disease, and that focusing on suppressing or modulating the immune system is like treating a broken leg with painkillers. This disease damages far more than just the myelin coating of nerve cells, and it's great to know that research time and money is finally being spent on trying to comprehend the underlying cause of the disease, as well as searching for strategies to protect and repair damaged nerve tissue. This is a tremendous leap forward in the understanding of the Multiple Sclerosis disease process, and pertains not only to PPMS, but to all of the other forms of the disease as well. In my opinion, this video is must viewing for everyone afflicted with any form of MS.

The third video, "Moving Forward with PPMS", talks about the emotional and psychological impact of dealing with a progressive degenerative illness. It features Rosalind Kalb, PhD who is the Director of the Professional Resource Center at the NMSS, being interviewed by a very somber man who looks like somebody just defecated in his lap. Cheer up, dude, things can't be that bad...

At What Price Health?

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For the last few days, I've been pondering a thought exercise that recently popped into my mind. Imagine, for a moment, that an almost miraculous cure for MS has been discovered, one that can alleviate all MS symptoms with a single injection. A patient simply has to go to their doctor's office, get the shot, and, voilà, 24 hours later they are completely symptom-free, their nervous systems restored to an undamaged condition, and their general state of well-being suddenly better than even before they were diagnosed with Multiple Sclerosis.

Great, right? Sign me up!

Only, there's a catch. This "cure" comes with a terrible cost: after a considerable amount of time, every patient treated with this injection dies painlessly in their sleep. In the "X" amount of time before they die, the patient remains in the full bloom of health, right up until the night they go to bed for the final time. The question, then, is what would be the minimum duration of guaranteed health that would entice you to take the shot? In other words, would being restored to perfect health be worth it to you, if you knew with utter sureness that you would die in six months? One year? Five years? 10 years?

Would you be willing to trade a full life of chronic illness for a blissful time during which you would be completely unshackled from the chains of Multiple Sclerosis? For a time free of fatigue and cognitive dysfunction, of muscle spasms, spasticity and profound weakness, of bladder and bowel issues, of the constant daily struggle of dealing with the rigors of this miserable disease? An interval during which you'd have no reason to even think about braces and canes and walkers and wheelchairs and MRIs and neurologists and lesions and a medicine chest full of pills that hardly even seem to matter? When you could walk and run and dance (dance!), drive and play and travel, and finally, finally, once again be that fully functional man or woman that you used to be, that you've dreamed of being since the day MS started taking its dreadful toll?

How many months or years of restored health would be enough to entice you to undergo a simple but profoundly effective treatment that carried with it the ultimate price? Of course, the answer must differ for each of us, based on our own current state of disability, our rate of progression, the level of our misery, and the amount of hope we have that a cure, or even a truly effective treatment, can be found in time to help us.

Certainly, marital status and family situation factor greatly into the equation. Single people, or those without children, might be more willing to sacrifice longevity for a chance, though brief, to be healthy once again. For those who are married, and especially those with children, the calculus gets infinitely more complicated. How much time with a healthy parent would it be worth for a child to then lose that parent? Difficult questions all, and ones I think reach to the very core of our beings.

Personally, after much thought, I think I'd put my "X" at somewhere around a year or a year and a half. If a physician approached me with a syringe, and told me that the injection would guarantee me 12 months of perfect health, but at the end of that 12 months, I would die painlessly in my sleep, I would give the offer serious consideration. Of course, I'd want more time, all the time in the universe, but this thought exercise requires that we consider the absolute minimum amount of time we would settle for.

One year would give me time enough to experience all of those pleasures in life that I now miss so terribly, to travel to the places my wife and I have always wanted to see together, and to spend time with those who I hold closest to my heart. I don't have children, so that's not a consideration. I do have hope that stem cells offer real promise as a treatment, but I'm unsure that this promise will be fulfilled in time to help me. I have my doubts about many of the avenues currently being explored by MS researchers, and though strides are being made, I'm uncertain that the mysteries of MS will be fully unraveled anytime soon, and given my rate of progression, soon is the only timeframe that really matters to me. In addition, there is now question as to whether what I have is even really MS, and what chance is there that some mystery illness will be solved before it puts me into a state I deem to be simply unbearable?

So what about you, dear reader? What's the minimum amount of time for which you'd be willing to trade your life for perfect health? What's your "X"?

Toyota Develops Mind Controlled Wheelchair

Well, this is pretty amazing. The big brains at Toyota have developed a wheelchair that is operated through the power of the mind. By reading the user's brain waves, the chair can decipher the direction the user wants to travel.

As huge an advance as this might be, I can foresee problems with this technology in the future. There I'll be, happily zipping down the street on my mind controlled way, when an especially short miniskirt, a Lamborghini, or a particularly cute Labrador Retriever passes me by. Suddenly, the chair starts whirling like a dervish, and soon launches me directly into traffic or through a plate glass window. Given my propensity for daydreaming, I might set out for a doctor appointment, and wind up in the Gobi desert...

I know my mind, and believe me, it's not to be trusted to follow a straight line for more than 30 seconds.

Barking up the Wrong Tree...

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A promising experimental MS drug, targeted at patients with progressive disease, has failed its late stage trials. The drug, Dirucotide, was reported to have shown remarkable effectiveness in early-stage trials, and, as there are very limited treatment options for those with progressive MS, much anticipation accompanied the compound's hoped for success. To put it bluntly, the fact that this drug failed really sucks.

Dirucotide was designed to work by restoring a patient's immunological balance, thereby suppressing the immune attack that is supposedly behind the MS disease process. Its failure highlights two important points; first, that early stage trial results can be very misleading, and second, that perhaps it's time to look beyond tinkering with the immune system when searching for answers to the MS puzzle.

My neurologist has been warning me for years to take all published early-stage trial results with several grains of salt. More often than not, there are financial motivations behind their release; in the case of large public companies, to drive up stock prices, and in the case of smaller, private companies, to attract investor cash. One must never forget the power of the almighty dollar.

The unfortunate reality is that Multiple Sclerosis has become a multibillion dollar a year industry, and competition among competing drug manufacturers is intense. Stock prices rise and fall on bits of news and hints of future success or failure, and pharmaceutical companies provide a steady stream of positive information designed to pique investor interest. Dirucotide, for instance, was initially developed by a small biotech company, BioMS. After the drug's success in early trials, pharmaceutical giant Eli Lilly stepped in to partner with BioMS for the much larger late stage studies. Unfortunately, both companies were burned by the false optimism generated by the drug’s early positive results. This is not to say that those results were deliberately misleading, but they were put to very good use by the PR folks.

Virtually every MS drug on the market seeks to either modulate or suppress the immune system. According to the autoimmune theory that now dominates MS research, an aberrant immune response during which a patient's immune cells attack their own nerve tissue is the driving force behind the disease. Therefore, logic dictates that suppressing this immune attack should alleviate the ravages of the MS. One must simply get the body to stop disrespecting itself.

In patients with Relapsing Remitting Multiple Sclerosis, who exhibit high levels of inflammation in their central nervous systems, this approach has seen success, as is evidenced by reduced relapse rates and improved MRI images. In patients that eventually transition to or start out with progressive disease, in which there is typically very little evidence of inflammation, these therapeutic approaches have proven to have little or no value.

Left untreated, the vast majority of RRMS patients eventually transition to the progressive form of the disease. Even when treated, it's not clear that today's MS drugs do more than just delay this transition. Once a patient has transitioned to the progressive form of MS, drugs targeted at the immune system have proven to be virtually useless in arresting disability progression. Given that fact, it seems to me to that the immune response targeted by all current MS drugs is more a symptom of the disease than its cause.

In my mind, treating MS by suppressing the immune system is like treating a broken leg with painkillers. The patient stops hurting, but nothing is done to address the underlying cause of the pain. Of course, this analogy is a bit simplistic, as treating a broken leg with painkillers has no actual therapeutic value, whereas immunosuppression and modulation in RRMS patients has been shown to have more than cosmetic effect.

Still, the fact remains that there is some unknown factor driving the Multiple Sclerosis engine, a factor which continues to damage nerve tissue after the hallmark immune response subsides. Might it not be that the immune response seen in MS patients is not an attack directed at their own tissue at all, but is an overwrought and hyper-aggressive attempt by the body to respond to an as yet undiscovered "X factor"? Unfortunately, very little privately funded research is targeted at discovering what this hidden culprit might be.

Virtually every drug now being developed to treat MS is meant to either suppress or modulate the human immune system. Over 70% of medical research in the United States is funded by publicly traded pharmaceutical companies, whose legal mandate states that they are beholden to their stockholders, not to the patients taking their drugs. The job of a pharmaceutical company CEO is to increase his company's profits, and thus the price of its stock. Once again, it's all about the money, honey. When there are billions of dollars being made by marketing drugs that only marginally address the root cause of serious illnesses, the profit motive runs counter to the desire to find cures. To their credit, the drug companies have managed to develop products that have turned previously fatal diseases such as diabetes and AIDS into chronic illnesses, but this success has also served to make the victims of these diseases lifelong consumers of highly profitable pharmaceutical products.

I'll end with a plea to the MS researchers of the world: Please, please, stop focusing solely on the immune component of the Multiple Sclerosis disease process, and instead set your sights on whatever it is that might be destroying a patient's nervous system, or might be the root cause of a patient's immune system going on the attack.

Folks, it's time to start digging a little deeper...

Help Yourself...

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As a patient dealing with a chronic, debilitating illness, it's of the utmost importance that you take control of your own journey through the healthcare system. It's very easy to just throw up your hands and leave your fate to the doctors in whom you entrust your care, but I've slowly learned that by doing so you run the risk of getting lost within the system.

We all would like to think that we are our doctors’ star patient, constantly at the forefront of their minds. Unfortunately, this is simply not realistic. Medicine is a business, and, as practiced in the United States, is a volume business at that. As well meaning as our physicians and their staff might be, the fact is that every year they see hundreds if not thousands of patients. During the time that you are in their office, on their examination table, you can expect to command your doctor’s full attention, but as soon as you leave the office they must invariably turn that attention to the next patient. This is not an indictment of physicians, the overwhelming majority of whom strive to be the very best healers they can possibly be, but human nature is human nature, and a person has only so much attention to give.

Multiple sclerosis, like other chronic degenerative diseases, is a very complicated illness, one whose cause remains unclear, and whose treatments, and their effectiveness, vary widely from patient to patient. Therefore, it is vitally important that each patient maintain a clear understanding of their own particular case history, and educate themselves as best they can about the nature of their own disease. Nobody would expect a patient to comprehend the complex biology of nervous system disorders, but at the very least, a responsible patient should arm themselves with a complete knowledge of their treatment options, maintain complete files of their test results, and understand the idiosyncrasies of their own case.

Both on the Internet and in real life, I've run into far too many patients who are woefully ill-informed about the sickness that might cripple them, and who therefore don't give themselves the best chance at fighting the disease. A few years ago, I spent a week in a rehab hospital undergoing intense physical therapy. I was shocked at how many of my fellow MS patients at this facility were sadly unaware of the basics of their disease and the treatment options available to them. Some of these patients had made repeated visits to the hospital to undergo rehab, yet had only the scantest knowledge of what MS was doing to their bodies, and of the therapy options available to them. Some were in a form of denial, but it seemed that some had simply never thought to empower themselves with knowledge, instead expecting their doctors to provide them with any and all information they might need, and to make their treatment decisions for them. Certainly, a patient should never be their own doctor, but forming a partnership with your doctor is crucial in fighting a disease like multiple sclerosis.

The need for self advocacy also holds true when dealing with the staff of a doctor's office or clinic. At many large treatment centers, there are many layers of administrators and nurses between the doctor and the patient. Some offices are more efficient than others, and sometimes phone calls are not returned, messages do not get through, and test results are poorly communicated, leaving the patient in the uncomfortable limbo of waiting for a response that might never come. In these cases, there's a thin line between persistence and being a complete pain in the ass, and that line, when crossed, is entirely counterproductive.

There have been times when I've literally sat staring at the phone, anguishing over whether I should make yet another phone call to a physician's office, in the hopes of getting a much needed answer or anticipated test result. There is no ready number to how many phone calls is too many phone calls, or how much time spent waiting is too much time spent waiting, and each situation requires a judgment to be made on the part of the patient. Despite such occasional frustrations, I try to make it a rule to always be polite in my communications with office staff, and to let staff members know how truly thankful I am to them when they do provide help and assistance.

Although one invariably runs into the occasional bad egg, most clinic personnel are well-meaning and hard-working individuals, and any lack of responsiveness on their part is more often than not an indicator of just how busy, and sometimes overwhelmed, they are. Just as you never want to piss off a waiter, who might spit in your food, you should try to play nice with the staff of your doctor's office, because quite often you'll spend more time talking to them than to the doctors themselves. And, really, what's the point of being an asshole?

So, educate yourselves constantly, keep extensive documentation of all test results and office visits, and despite your frustrations, try to be nice. Above all, don't be afraid to take responsibility for your own well-being.

Please, Check Your Meds!

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As a patient dealing with chronic illness, I regularly visit a number of doctors, each of whom prescribes for me a variety of pharmaceutical concoctions. Along with my primary neurologist, I see a primary care physician, a urologist, a neuro ophthalmologist, an endocrinologist, and a pain management specialist. Each of these MDs makes good use of their prescription pads, and subsequently I have enough pharmaceuticals in my bathroom to open my own apothecary.

I'm sure this delights the hell out of the big pharmaceutical companies, who rival insurance companies and the New York Yankees on my list of most detested entities on Earth (one of these days, I'll post a long and barely coherent rant about Big Pharma and its rancid influence on the healing professions), but it's left me with literally handfuls of pills to take each day.

As I'm chugging down these little vessels of wonderfulness, in their dizzying array of different shapes, sizes, and colors, I often wonder if they might be doing me more harm than good. I mean, here I am, in possession of a finely balanced symphony of physiology, a body that has taken millions of years of evolution to develop, and I'm two or three times daily ingesting substances that profoundly manipulate the workings of many of its systems. Of course, in my case, evolution as provided me with a body that probably should have been recalled, but that's besides the point. A little research into many pharmaceuticals reveals that their mechanisms of action are poorly understood, other than the fact that they appear to work. Kind of like magic; here's a quarter, now it's gone, except it's not really gone, now is it?

On their own, each of the pills we take may be beneficial, or at least not harmful, but when taken in addition to other medications, serious consequences can result. Drug interactions are a significant cause of death in this country, and as responsible patients we shouldn't rely on our doctors to keep track of each and every prescription that has been given to us.

There is a terrific website, provided by drugs.com, which allows you to enter the names of all of the prescription medications you're taking, and then alerts you to any possible problems with drug interactions. The site even allows you to save your list of drugs, so you can add to it the next time you're given a prescription. I urge everybody reading this post to please, please visit this website and check your medications. I did so yesterday, and was alerted to a possibly severe interaction between two of the drugs I'm currently taking.

So, if not for yourself, do it for the Wheelchair Kamikaze. I can't afford to lose any readers. Click this link and check all of your medications.

Really, do it now.

Frank McCourt, Noted Author and My High School English Teacher, Dead at 78

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Frank McCourt died today, after developing meningitis while struggling with melanoma.

Mr. McCourt won the Pulitzer Prize for his memoir "Angela's Ashes", but more importantly (to me, anyway), about two decades previous to his receiving literary accolades, he was my high school English teacher. I had him for two semesters, once in my sophomore year, and then again as a senior.

To say that his classes were a little offbeat would be a serious understatement. More often than not, Mr. McCourt, sporting bloodshot eyes and the faintest whiff of last night's pub, would conduct a monologue about the vicissitudes of life and the various lessons he had or hadn't learned from them, in his always witty and heartfelt Irish brogue. He'd go on little tirades about how his bankrupt brother could get credit cards but he couldn't, or how the historically recent notion of "falling in love", with its likening of romantic attachment to some cosmic dog shit that one accidentally steps in, has led human beings to plumb the depths of misery...

When the class's attentions actually did turn to the study of English, we would often read Mimi Sheraton's restaurant reviews in the New York Times, the prose of which could transport Mr. McCourt to a state of rapturous joy. It wasn't until I read Angela's Ashes nearly 20 years later, that I understood his fixation on Ms. Sheraton's columns. He'd grown up quite literally starving, and the eloquent superlatives lavished on edibles by Mimi Sheraton must have put words to his own lifelong fascination with food.

When I mentally time travel back to high school, I often find myself sitting in Frank McCourt's classroom.

He was my favorite teacher.

Rest in peace, Mr. McCourt...

The Problem with Progression

Of late, the MS has been giving me a pretty good ass whuppin'. It's getting harder for me to stumble around my apartment, and I'm pretty close to making the decision to start using my wheelchair for indoor as well as outdoor mobility. Up until now, I've used the chair exclusively for my travels through the beehive of streets in New York, but now the uncomfortable realization is hitting that I also need it for excursions from the bedroom to the kitchen. It looks as if the progression of my disease is about to force me to crash through yet another psychological barrier.

During my first visit to an MS specialist, I remember the doctor going on about "stopping the progression of the disease". I was new to the world of MS, my head was spinning with thoughts of "spinal lesions", "lumbar punctures", and "brain MRIs", and I simply could not process what he was talking about. Progression? What the hell is progression? I have a little limp in my right leg, upsetting yes, but hardly the end of the world...

Well, now I'm all too well aware of the meaning of progression. In six years, that little limp has reached out and put a choke hold on much of the rest of my body, and try as I might, I just can't seem to wriggle free. I could list a litany of my defective body parts, but what's the point? It would most likely just need to be updated again next week. Each new day seems to bring with it a changing set of circumstances, and unfortunately, those changes don't ever seem to be for the better.

To state the obvious, the problem with progressive neurologic disease is that it progresses. Little by little, you lose yourself to your illness. As great a toll as this progression takes on the physical body, the psychological impact of watching yourself whither away over weeks and months and years cannot be overstated. Back in the dark ages of my MS experience, I'd sit in the neurologist’s waiting room and see other patients in their wheelchairs and scooters, and thank the heavens that I was not one of them. Of course, I knew that they did not just one day materialize disabled, and that they had arrived at their current physical conditions incrementally, over time. I just couldn't fathom that I would follow the same road. I'd look at those poor souls, my mind would reel, deliberately set me apart from them, and quickly force my attentions elsewhere.

Now, I'm the guy sitting in that waiting room in a wheelchair, and I can see the less disabled patients looking at me through familiar eyes. I make it a point not to appear dour or downtrodden, and I'm always quick with a wisecrack or two, but I know too well the quiet horror they are feeling. Truth be told, they are not wrong in feeling it. As good a spin as you can put on it, as upbeat and determined as you might be in the face of it, the prospect of doing battle with an insidious enemy that slowly swallows you from the inside out is a perfect example of why human beings come equipped with a healthy capacity for denial.

No matter what stage of the disease you're in, peering forward carries with it an element of dread. The endless road of progression, if left unchecked, must ultimately lead to an extremely ugly place. Along the way there are milestones to be reached; the first time you can no longer climb a flight of stairs, the first cane, the realization that you can no longer sign your name.

At first I measured the disease’s progressive toll in the slowly shrinking distances I could walk, first in miles, then blocks, then yards, and now feet. Every holiday and special event has become a psychological landmark, a yearly milestone from which I can look back to the same moment in previous years and assess just how much I've lost, while simultaneously wondering about the scope of the wreckage I'll be dealing with in another year’s time. Will this Super Bowl be the last that I can watch from a couch that I've walked to under my own power? Or the last that I will be able to feed myself chips and dip? Or the last that I'll be able to manipulate the remote control? Or, simply, the last?

Ongoing disease progression leaves us little time to mourn the losses we've suffered. If one were to literally lose a leg, as horrible as that would be, the trauma could be experienced, mourned, and then adapted to, leaving a person in a state of permanence, albeit an unfortunate one. With progressive illness, the losses just keep mounting, and life becomes a constant exercise in adaptation. I haven't had the chance to fully mourn the loss of the use of my right hand, because I'm aware that my left appears to be following suit. I watch people happily strolling through the park, and feel a deep yearning, but that yearning is shadowed by the apprehension of insults yet to come. As layer upon layer of disability piles up, the process of mourning any single loss gets overwhelmed by the sheer volume of them all.

Strangely, and thankfully, I've found that the reality of each new stage of disability does not approach the horror that accompanied the anticipation of it. Back in the days before my illness, I'd have never thought I'd have the capacity to adapt to the level of disability I'm now experiencing. I once would have categorized the possibility of my being forced to rely on a wheelchair as unthinkable, but when that moment arrived, the world somehow kept spinning. The loss of functionality in my right arm and hand has led me to learn how to do things with my left, and through all manner of adaptations, I've managed to maintain an acceptable quality of life. So far, at least, the realities of encroaching disability have not been as ghastly as I'd imagined they would be. I am constantly aware, though, that there will come a tipping point, when even the barest illusion of normalcy will disintegrate under the weight of some new undeniable reality.

Of course, I am not without hope. Even without intervention, MS is an unpredictable beast, and patients with the most aggressive forms can sometimes find themselves reaching plateaus for years at a time. Medical research is shedding new light on the disease on an almost daily basis, and the promise of stem cells to repair damaged nerve tissue is steadily moving closer to becoming a reality. Trials of neuroprotective agents are currently underway, and radical new theories about the very nature of multiple sclerosis are finally being given proper scientific scrutiny.

Still, though, the disease marches on, the struggles become harder, and, with the help of friends and loved ones, the best we can do is strive to stay rooted in the moment...

Get Involved! Support Creating a National MS Registry...

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Okay, fellow MS people (and those who love us), here's a chance to have your voices heard by the powers that be in Washington. The National Multiple Sclerosis Society is organizing an e-mail campaign urging the passage of The National MS and Parkinson's Disease Registries Act, which would for the first time establish a national coordinated system to collect and analyze data on multiple sclerosis, Parkinson's disease, and other neurological diseases and disorders.

Believe it or not, the last time a national study on the incidence and prevalence of multiple sclerosis in the United States was conducted was way back in 1975. A lot more than hairstyles and the width of lapels has changed since then, and a new study could shed light on a wide range of issues impacting the research and treatment of our shared enemy, multiple sclerosis.

The NMSS has made it easy to get involved. Simply click on this sentence to navigate to a webpage that they've devoted to the cause, which will allow you, with a few simple clicks of the mouse, to send e-mails in support of this important legislation to your senators and congressmen. While you're at it, you can sign up to become an "MS activist", and become involved in all of the Society's efforts to lobby on behalf of MS patients nationwide.

So, say it loud: I have MS, I'm mad as hell, and I'm not going to take it anymore! Take action and help yourself while you're helping others...

We may be gimpy, but we ain't wimpy...

The Un-Comfort Zone

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My recent trip down to Bethesda, MD really accentuated just how disabled I've become. Placed in unfamiliar surroundings, the veneer of normalcy that I cocoon myself in at home quickly comes apart at the seams.

Not that I'm waltzing around my apartment with the dexterity of a spider monkey, but I've incorporated all kinds of workarounds and improvisations into my everyday life that allow me to do the things I need to do. If I'm alone, or with my wife, beyond the view of outsiders, the fact that a caffeinated snail could beat me in a foot race has simply become an accepted fact of life. I know it, my wife knows it, and life goes on...

As my level of disability has gradually increased, though, my efforts to remain functional have led me to develop ever more elaborate choreographies. Getting into the bathroom now requires an intricate series of clumsy maneuvers. Once I've reached the threshold of the loo, my "good" left hand, holding my cane, reaches in and flicks on the light switch. Then, with one foot on the tiled bathroom floor, I hang the cane on the towel rack, and my now empty left hand grabs at the doorknob for balance. Using the knob as a fulcrum, I stumble into the bathroom, and then swing the door shut, in one motion releasing the knob and then frantically reaching towards the sink for support. My every move requires some sort of compensatory action to get around the fact that my right side is completely uncooperative, but over time, and with repetition, these actions have become more or less routine.

Likewise, getting around my neighborhood in my power chair now seems commonplace. The road map in my head is aware of which curb cuts are suicidal, which sidewalks are pockmarked battlefields, and which routes provide the least bone jarring path to my usual destinations. After using the chair around the neighborhood for a year, these calculations have all become automatic.

Take me out of the familiar, though, and I'm increasingly helpless, as our recent trip down south unnervingly demonstrated. Making a highway rest stop is now anything but restful. Once parked, I slowly and painfully unfold my obstinate legs and drag myself out of of the car. Karen pulls out the collapsible manual wheelchair we use when traveling, and sets it a step or two from the passenger side car door. Using the roof of the car for balance, I pivot and then plop myself into the chair. My fate now rests entirely in Karen's hands. I have been rendered a wisecracking blob of flesh and bone.

I confess, I detest the manual chair. The power chair can be a hoot, and as I've mentioned in other posts, I almost feel like it gives me superpowers. Karen sometimes even hitches rides on the back of it, when we're traveling long distances over reasonably smooth pavement, much to the amusement of passersby. The manual chair, on the other hand, makes me feel about as useful as a pile of manure in a wheelbarrow. I've tried to make the best of it, sometimes shouting, "Mush, mush, onward Huskies!” (much to Karen's chagrin), but let's face it, you can't polish a turd.

Once arrived inside the rest stop building, attempting to use the men's room has become an act of pathetic derring-do. As the other fellas enter and exit the facility with various degrees of urgency, there I am doing a slothlike wobbling shuffle, gripping my cane with white knuckles as I desperately try to avoid any wet spots and discarded paper towels on the tiled floor. What used to be just a quick stop for a pee is now a nerve-racking trek through a not-so-funhouse filled with potential hazards.

The same can be said for navigating supposedly "accessible" hotel rooms. In my experience, most are "accessible" in name only, having gained that designation through the implementation of mandated modifications made without any thought given whatsoever to real-life usability. The shared tile between the bathroom floor and the roll in shower is usually silky smooth and becomes a skating rink when wet, shower seats are often installed as far from the actual showerhead as is architecturally possible, and handrails are attached in what appear to be abstract impressionist patterns.

Whereas at home I know my workarounds by heart, when confronted with a new layout, my every move requires planning and consideration. Going about even the simplest task is physically exhausting and mentally taxing. Weaving between thoughts of "Hmm, should I grab the wall and then the edge of the dresser?", are internal exclamations of "Holy crap! I am an honest-to-goodness cripple!”

Away from my home base, my carefully crafted illusion of normalcy gets stripped naked, and exposes my true state of vulnerability not only to the world outside, but most disconcertingly, to me. Assuming the persona of the Wheelchair Kamikaze is therapeutic; the reality of being the "Going to the Men's Room Kamikaze" is anything but.

Still, one day follows another, and we learn to suck it up and force or fake our way through. It's incredible what a person can get used to, isn't it?

My Results from the National Institutes Of Health...

Well, it seems like I have some of the doctors at the National Institutes of Health scratching their heads a little bit. Leave it to the Wheelchair Kamikaze to keep things interesting...

According to the doctor who examined me during my visit to the NIH, my MRI results show that I should be in worse shape than I actually am. That's kind of hard to believe, because I'm really not in great shape. My right side is pretty much useless, and my left side is getting kind of funky.

The NIH doctor explained that my one and only problematic lesion is high up on my spine, at the juncture where the spine meets the brainstem, and is quite large and invasive. Since all of the signals from my brain have to pass through the real estate that this bestial lesion (henceforth to be known as "Adolph") is camped out on, the potential is there for it to cause some pretty bad mojo. Thankfully, for whatever reason, Adolph has so far not lived up to that potential. It's like I have a rebellious underperforming teenage lesion, but in a good way...

When the radiologists at the NIH first looked at my MRI images, they assumed that I was suffering from a disease more like Transverse Myelitis than MS. Not knowing my clinical history, they surmised that Adolph occurred during an inflammatory event some time ago, and that whatever disability I had acquired at that time had remained constant.

There's no evidence of any ongoing inflammation on my MRI images, so the images don't reveal evidence of active disease. When the radiologists were informed that I've instead suffered a slow accumulation of disability over the last six years that continues to this day, they were surprised. It seems that there's a disconnect between my MRI images and my clinical presentation.

In general, for most MS patients, there is little correlation between lesion load and disability. In my case, though, since Adolph is my one lesion of consequence, and it's in a very problematic spot, it would appear that the correlation between the severity of Adolph and my physical condition should be higher. Lucky for me, it isn't. Go figure...

Since I'm experiencing ongoing disease progression, and Adolph has neither changed in appearance nor been joined by any villainous friends in the six years since my diagnosis, there has to be some other process at work that is damaging my nerve fibers. Identifying that process is the million dollar question. My diagnosis could still be MS, albeit a very atypical case, especially since I've tested negative for most of the other likely candidates. I guess I just may be Wheelchair Kamikaze, international man of mystery diagnoses...

I'm now scheduled to go back down to the NIH in Bethesda on July 16 for some more testing. They're going to do some advanced MRI scans, including an MRI spectrograph, which may shed some light on the biological makeup of Adolph, and another scan that might indicate whether or not the nerve fibers within Adolph are severed.

Needless to say, I'm beyond grateful that the NIH has taken an interest in my case, and that some of the best minds in the business are involved. The NIH doctor is going to consult with my primary neurologist, who is himself a brilliant MS specialist, and share all of their findings and test data. I'm hopeful that all of this testing will prove beneficial, as traveling back and forth to Bethesda is kind of exhausting...

As I said in my previous post regarding going down to the NIH, my being seen there is really a no lose proposition. At worst, I'm contributing to the greater good and helping to advance scientific knowledge, which I hope will be of value to future victims of this horrible disease. At best, who knows, maybe all this effort will pay off, and save my sorry ass. You've got to be in it to win it, know what I mean?

New Wheelchair Kamikaze Video: In Search of Audrey Hepburn

Here's my latest video effort. At the request of a friend, my cousin Todd and I embark on a quest to find a statue dedicated to Audrey Hepburn, located on the east side of Manhattan. The trip takes us through Central Park and the heart of midtown Manhattan, and obstacles abound...

Hope everyone has as much fun viewing it as much as I had making it...

My Visit to the NIH: Our Tax Dollars at Work

A few months ago, while leafing through one of the many MS publications that find their way into my mailbox, I came across a notice about a study being conducted by the National Institutes of Health that sought to compile a large database of MS patients who might be used in future studies. The NIH was seeking subjects to come down to their facilities in Bethesda, Maryland for a complete diagnostic workup, so that they might be classified as having a definite diagnosis of MS, and thus be eligible for future research studies. The NIH would also use the opportunity to compile data to be included in a wide-ranging "Natural History of MS" analysis.

Since my diagnosis has been called into question, this sounded like a terrific opportunity to get some questions answered, and to take part in research that might eventually help to unravel the mystery of MS. It seemed like a no lose proposition; I could help myself by having NIH scientists evaluate my case, and I could help in the fight against MS by submitting to their research protocols. The study would give me the opportunity to donate my body to science without having to go through the inconvenience of actually dying.

I called the study’s intake telephone number, and spoke to a helpful nurse at the NIH’s Neuro Immunology department. Given the fact that I live a considerable distance from Bethesda, she was at first a bit discouraging about my taking part in the study, but as I explained the atypical nature of my disease presentation, she suggested that I forward my medical records to the department. I faxed my records over to them the next day, and about a week later received a phone call telling me that I had been accepted into the study. Not only was I accepted, but the NIH would also pay for me to stay two nights in a hotel near their facility. Very cool.

My wife and I drove down to Bethesda last Tuesday night, and were seen at the National Institutes of Health's main facility on Wednesday afternoon. The facility is located on a large campus, comprised of about 30 buildings. The main medical center is the second-largest building in the federal government, smaller only than the Pentagon. To say that the facility is impressive is an understatement. Every person we interacted with, from desk clerks to nurses to physicians and researchers, was absolutely top-notch, and not only extremely proficient at their given job but friendly and personable as well.

Over the course of two days, I was examined by the NIH’s Neuro Immunology staff. I was given some physical and cognitive testing, and a thorough neurologic examination. Blood samples were taken, and I underwent brain and C-spine MRIs.

The doctor who examined me was absolutely superlative, a brilliant woman who spent almost 5 hours over the course of two days interacting with my wife and me. She not only took a full medical history, and conducted a comprehensive neurologic exam, but also answered all of my numerous questions in a thoughtful and deliberate manner, and indulged me in long conversations on topics ranging from the many different theories regarding the MS disease process, the influence of Big Pharma on medical research, and the promise of future therapy options (stem cells, neuroprotective agents, etc.). She was insightful, genuinely interested in my case, and frank and honest in her assessments. While very compassionate, she also maintained a strict scientific perspective. I really can't praise her highly enough.

After looking over my previous MRIs and medical records, the doctor advised me that my case did seem quite atypical, and that I might not be able to get a definitive diagnosis simply because my disease profile does not fit the diagnostic criteria of Primary Progressive MS, or any of the diseases that could likewise be causing my symptoms. The bottom line is that I have a big honking lesion right at the base of my brain, a very problematic spot, which is causing all of my neurologic problems.

This Monday, the staff of researchers and physicians of the Neuro Immunology department will go over all of my new MRI images and blood test results, along with the information gathered from my physical examination and medical history, and try to come up with a determination regarding my disease. I should receive a phone call on Tuesday or Wednesday about their findings, and suggestions for future treatment options and/or diagnostic testing.

If it's determined that it's probable that my disease is a form of MS, I'll be asked to continue with the study, which would involve my going down to Bethesda in July for some additional MRIs and a lumbar puncture. Whether I continue with the study or not, I was told that I am now part of the NIH system, and was encouraged to use them as a resource regarding any questions or issues I might have regarding my disease and future treatment options or testing. I was also told that I could request another evaluation at any time, should changes in my disease warrant it.

All in all, whether or not I get a definitive diagnosis, my experience at the National Institutes of Health in Bethesda was an extremely positive one. I felt like I was doing my part to help fight this damned disease, and it was inspiring to find such a well-run facility, devoted entirely to pure medical research, staffed with exceptional people, and funded solely by our taxpayer dollars. My visit there helped further my faith that, despite the dysfunctional nature of much of our health care system, the puzzle of multiple sclerosis, and many other diseases, will eventually be cracked.

Pinball or Pincushion?

Throughout the course of my illness, I've pretty much been able to avoid falling into the "why me?" trap by rephrasing that question, "why not me?” I've experienced a few one in a million positive events in my life (winning a pick five lottery and getting a hole-in-one in golf, to name two), so ringing one up on the negative side of the ledger really doesn't surprise me. Getting MS is a doozy of a negative, and sucks in every way that something can suck, but I've thoroughly read my lease on life and it unfortunately doesn't include an exemption on getting suck ass diseases. I don't often succumb to self-pity, as I realize that triumph and disaster are two sides of the same coin, and both are total impostors.

Rather than "why me?” the question that does haunt me is "how me?” I'd really like to know just how I managed to pick up this particular affliction. Since the best neurologic minds in the business still haven't determined the underlying cause of MS, there is no good answer to this question. I'm certain that in order to get MS a genetic predisposition is required (my mom has Type I Diabetes), and recent research indicates that all MS patients are infected with the Epstein-Barr virus (as am I, as per blood test results).

So, I have two of the factors that science tells us lead to Multiple Sclerosis. Still, not everyone with a genetic predisposition and an Epstein-Barr infection gets MS, so there have to be other triggers involved. These triggers may be different for different patients, and what I want to know is just what other factors did I run into, and when did I run into them? Was there some way I could have possibly avoided them?

In effect, I want to know whether I am a Multiple Sclerosis pinball, coming to the disease through a random series of events that were absolutely beyond my control, like a pinball getting whacked around a pinball machine, or a Multiple Sclerosis pincushion, born to be afflicted, fated to get MS no matter the direction of my life?

On a philosophical level, this is a question of free will versus destiny. Of course, the answer to the question of how I got MS is really of no consequence, since I have the disease and the knowledge of how I got it will never change that. Still, I find myself sifting through the pieces of my past, trying to pinpoint when the first signs of my illness showed themselves, and if there was any discernible events or episodes that preceded them that may have set the disease process in motion.

This is a fools errand, to be sure, but the human mind strives to find patterns in randomness. We look at clouds and see animals, or faces, or an avocado with 6 feet and hairy armpits, and we likewise look back at our lives and try to make all the pieces fit. We make choices every day that can and do completely alter the courses of our lives, but ultimately, despite our choices, would the outcome be the same? Do the infinite meandering paths that my life might have taken all converge at a point called MS, or were there roads not taken that might have curved around it?

I do believe that we have certain lessons we are meant to learn in this life, some bits of wisdom that we must acquire. My experiences with MS have provided me with some important insights, many of which I've tried to express in this blog. Some of them are lessons that, upon looking back, I seem to have been actively rejecting back in my healthy days. If I'd been more receptive to them, would there have been no need for the universe to whack me upside the head with the MS stick? Perhaps it wasn't my physical actions that led me to MS land, but my obstinate and willful avoidance of life lessons that were being gently lobbed at me that resulted in the catastrophic obliteration of normalcy that MS has wrought. Did the universe resort to screaming bloody murder because I simply refused to listen to its whispers?

Then again, perhaps it all was completely beyond my control, my getting MS an event as random as the computer generated numbers on a lottery ticket. Pinball or pincushion? Either way, I'll not be dancing any time soon...

Beguiling Baghdad: War, Carnage, and... Stem Cell Therapy?

Well, here's a reason to go to Baghdad, even if you aren't employed by Halliburton or the United States military. If you could manage to avoid the sectarian violence, suicide bombers, and improvised explosive devices, you might just be able to get stem cell therapy for your Multiple Sclerosis...

According to this article in "Stars and Stripes", a doctor in Baghdad is performing stem cell therapy on Multiple Sclerosis patients, with some success. He's using patients' own stem cells, derived from their bone marrow, and injected back into their spinal columns. It sounds like the procedure being used is fairly crude, but if even this primitive procedure is resulting in some benefit to the patients receiving it (and that's far from proven), then more sophisticated procedures would certainly seem to hold great promise.

I feel like I should be able to come up with some kind of war-torn witticism here, or it least a good falafel quip, but nothing seems to be coming. I invite witty readers to submit something in the comments section...

Stem cells in Baghdad? What's next, therapeutic cloning in Kabul?

It's All about the Money, Honey......

This is just the kind of thing that drives me absolutely crazy.

Here's an article (from Forbes magazine, no less) that talks about a root that is used in traditional Chinese medicine that has been shown to have very specific immunosuppressive properties, which seem to make it an ideal candidate to be developed into a drug to combat autoimmune diseases. Unlike the immunosuppressive drugs that are currently on the market, this compound (derived from the hydrangea root) targets very specific cells within the immune system, leaving the rest of that highly complex system intact. This would apparently greatly reduce the risk of serious infections and other potentially deadly side effects which are seen in many of the immunosuppressive and immunomodulating therapies that are currently marketed as MS drugs.

Sounds great, right? So, what's the problem? Well, as the article states, "Because the compound is now in the public domain, the pharmaceutical industry has not shown interest in further developing it therapeutically, researchers said".

That pretty much sums up the warped state of the medical research model in the United States. Over 70% of all medical research is funded by pharmaceutical companies, whose primary motivation in funding such research is to develop profit-making drugs. Nevermind that this compound might prove to be more effective than the outrageously expensive and sometimes highly toxic therapies currently on the market. The fact that the compound holds no profit potential means that it is most likely DOA, as far as its ever being developed into a therapy that will reach the consumer market.

Of course, we could take matters into our own hands and just try taking hydrangea root capsules, but at what dosage? How will it interact with the other drugs that many MS patients commonly take? Also, will unrefined hydrangea root have the same effect as the compound discussed in the article? There's a good chance these questions will never be answered, because Tysabri gets charged at nearly $4000 per monthly dose, the interferons go for about $1500 per month, Rituxan costs about $20,000 for a six-month dose, and a bottle of hydrangea root capsules sells for $3.75.

Aargh...

Multiple Sclerosis, The Devil In My Details...

Sometimes, getting what you always wanted isn't all it's cracked up to be.

When I was in my early 20s, I was loudly committed to living a bohemian existence. I was the lead singer of a local punk rock band, and grudgingly worked just enough hours in my part-time "day job" to about cover rent, food, booze, and cigarettes. I kept the hours of Dracula. Most nights would find me playing pool in some divey bar, and I never arose before the crack of noon. As old jazzmen used to say, I lived like I didn't know that there were two 10 o'clocks in one day...

I swore to all who would listen that I would never, never, NEVER join "mainstream" society. I would live my life entirely as part of the subculture, divorced from the world of 9-to-5 jobs, American Pie, and social convention. I vowed I would never capitulate, and that I would be steadfast in following my path, never allowing myself to be enticed by the glittering goodies that conventional society would seductively dangle to get me started down the slippery slope towards normalcy, like a corner dealer offering up a free rock of crack.

My mom would yell that I acted as if the universe owed me a living, and though I reflexively snarled back at her, deep down I knew she was right. I was sure the fates had something special in store for me. I simply would not entertain the thought that I was destined for the drudgery of the everyday. If my being a rock star wasn't in the offing, well then, I'd make it by writing, or through some other as yet unrevealed stroke of providence.

If a fortune teller had told me back then that in 20 years I wouldn't have to work, that I'd follow no schedule but my own, that my words would be read by countless strangers, and that I'd have a beautiful wife and an apartment in a New York City high-rise, I would have been beside myself with joy. Vindication! My dreams would be fulfilled! I would indeed live the life to which I somehow knew I was born.

As it turns out, those predictions did come true, but through twisted circumstances I never could have anticipated.

As time went by, I found no overnight success, and the inevitable realities of adulthood started taking their toll. The band broke up, student loans and other debts came due, and life in the urban underground finally started to lose its grungy appeal.

I took my first step down that dreaded slippery slope.

At the age of 27, I took a job as a video production assistant with a local cable company (I'd somehow earned a degree in film despite my rockstar fantasies). It was the first full-time job I'd ever held. The salary was paltry, but I did well at the job, and soon got promoted. I started dating women who expected more than cheap beer and raw emotion. I allowed myself little luxuries, which grew into bigger luxuries, and soon I just couldn't live without my convertible two-seat sports car and my antique wristwatch collection.

The job at the cable company gave way to a more prominent spot at a marketing firm, and that to a position in the corporate communications department of an international conglomerate. Though the spark of that willful 24-year-old still smoldered within, it wouldn't have recognized the face staring back at me in the mirror. In times of introspection there were always moments of self reproach, but these could be papered over easily enough with the purchase of another 65-year-old watch, or lost in a bottle of good wine. I had wandered far from the path I once thought I was meant to follow, and that path now seemed lost to me forever, the road not taken, the life not lived.

And then came Multiple Sclerosis, a wrecking ball smashing through the edifice of my life, leaving what had once seemed secure a crumbled, smoldering heap. The disease rendered my right arm and leg spastic and weak, and instead of sports cars I now drive a wheelchair. The career that fueled my venture into the mainstream was extinguished, and in place of the income it once provided, there are now monthly deposits courtesy of long-term disability insurance.

Yet, in so many ways, I’ve somehow gotten just what I had wished for all those years ago. My finances are no longer contingent on employment, and indeed, given my present circumstances, they do seem heaven sent. Once again I am a stranger to the morning, and there's no denying that I keep the hours of a novelist (as I sit here writing this at 2:30 AM). My words have reached countless strangers, though not the masses I once imagined, but instead a select audience whose appreciation has humbled me. I am free to live entirely unbound by social convention, whose limitations have been replaced by those imposed by the ravages of a progressive disabling disease and the good common sense of my wife. If I had actually received that thrilling prophecy 20 years ago, it would have been right on the money.

Like a rube wishing on Aladdin's lamp, I've seen my deepest desires fulfilled, but at a diabolical cost. And just like that rube, my most important wish appears to be one too many. It doesn't look like my MS is going to magically disappear any time soon. The devil, my friends, is in the details...