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...