Friday, October 17, 2014

My Body, My Self

In Mel Brooks’ 1981 comedy “The History of the World, Part 1”, a scene set during the French Revolution features a member of the aristocracy rushing to tell King Louis XVI, “It is said that the people are revolting!” His Majesty quickly replies, “You said it, they stink on ice”. 

The exchange is an amusing play on words that succinctly and humorously sums up the crux of the social upheaval engulfing France at the end of the 18th century. Substitute me for the King of France and the words “your body” for “the people”, and you’ll get a pretty good idea of what’s going on inside me, both physically and mentally, courtesy my creeping paralysis. My body is in full revolt, increasingly refusing to obey my commands, and I find the situation along with my withering body itself completely repellent. My body is revolting, and it stinks on ice (not literally, I hope, for the sake of those who get close enough to smell me).

The mind-body connection is a strong one, but progressive multiple sclerosis can be a buzz saw intent on breaking that bond. As the disease advances it forces one to separate body from mind, as the “self” becomes more and more divorced from the body that serves as its vessel. Despite lofty ideals about looking beyond the physical to the person within, our sense of self can’t help but be intricately entwined with our physical state; our identities, for better or worse, are in so many ways shaped by our outward appearance, a dynamic that seems ever on the increase in a culture obsessed with beauty.

We live in a society that idolizes physical beauty to the point of absurdity, elevating the utterly talentless but extraordinarily beautiful to fame and fortune and fueling in many an obsession with physical perfection. This incessant quest for beauty has in turn birthed entire industries devoted to indulging this ravenous appetite for youthful good looks which only further feed our insatiable societal lust for flawless appearance. Billions of dollars are made catering to a population infatuated by comeliness, with cosmetics, fad diets, exercise crazes, and plastic surgery all exploding to the sound of cash registers ringing and money changing hands.

Though we pay lip service to the idea that beauty is only skin deep, study after study has shown that in modern Western society those perceived as physically attractive have a quantifiable advantage over those not similarly blessed. There are, of course, exceptions to the rule, and beauty is by no means a sure ticket to happiness. Indeed, for some it can become a curse – think Marilyn Monroe – but our popular culture covertly and overtly continuously pounds home the message that the spoils of life most often go to those deemed gloriously pretty or handsome. I’m not sure that anyone can be immune to this pervasive zeitgeist, and I certainly was no exception back in my healthy days, although my relationship with my body even pre-MS had a long history of discord.

Growing up I was as skinny as they come. I’m not talking merely thin, I’m talking Boney Maroney, stick figure, almost comically scrawny. In addition to earning the nickname “Bones”, until I was 15 or so I was also quite short, and as a skinny little pipsqueak I was often subject to teasing not only by other kids but sometimes by adults as well. While it’s considered bad manners in grown-up circles to talk about a heavy person’s weight, it seems no such taboo exists when it comes to the extremely thin, regardless of their age. Being teased by other kids was bad enough, but in response I quickly developed a smart and scathing wit with which to defend myself from their juvenile barbs. Hurtful comments made by adults, though, always struck home hard, and I can still vividly remember some of the most boorish comments directed my way by adults who should have known better, the combined effects of which spawned massive insecurities that persist to this day.

A sudden growth spurt when I was about 15 years old took care of the pipsqueak part of my problem, but I remained superduper skinny for years to come. When I graduated college I was 6 feet tall and weighed in at a whopping 120 pounds soaking wet. Fortunately, sitting atop that emaciated frame was a face that was kind of cute, and much to my delight and amazement I discovered that there were women who actually like skinny men. I naturally gravitated towards artsy social circles and wound up the lead singer of a punk rock band, a role in which thin was most definitely in. In the underground music scene in the 1980s there was more than a touch of heroin addict chic, and I had the decided advantage of being as thin as a junkie without actually having to take drugs. I’d managed to find a social scene in which my being the skinniest guy around was actually an advantage. Go figure.

My body finally filled out in my late 20s, but I always remained on the thin side. Nobody was ever going to mistake me for Adonis. Although I was considered attractive, and was sometimes even called handsome, the insecurities that first took root when I was a skinny little nebbish lived on and I fought hard to overcome a shyness that at times bordered on social anxiety. I’ve been told that some found me aloof or even standoffish, but in reality I more often than not was quaking in my boots. That scrawny little 10-year-old was never far from the surface, a mind-body connection that persisted far into adulthood even though it no longer reflected my physical reality.

Now an entirely different kind of mind-body connection, or, more correctly, a mind-body disconnection plagues me. Just around the time that I had become comfortable in my own skin – thank you, decades of psychotherapy – a little problem called multiple sclerosis reared its ugly head. While walking my pooch along the Hudson 11 ½ years ago, I developed a slight limp in my right leg. All too soon that limp was joined by a weakening right arm, and whatever dastardly bastard was causing this distress refused to release its grip. Fast forward a decade plus and this beastly disease has just about fully consumed my right side and is gluttonously munching away at my left. My mind reels in horror at the damage that has already been done and can barely stand to contemplate that which may lie just beyond the horizon. But the me that existed before my illness struck still resides within, inevitably changed by the experience but ever yet struggling to maintain itself.

In a situation surreal but all too real, I find myself (and my self) trapped in a body that increasingly not only refuses to obey my wishes but seems to have a mind of its own. I sometimes put my disease to the test, concentrating intently, face contorted with effort, commanding my right ankle to flex, but much to my overwhelming chagrin and frustration, nothing ever happens. Absolutely nothing. Many nights, though, just about the time when I’m ready to go to sleep, my entire right leg will shudder and quake in muscle spasms beyond my control, violent enough to shake the bed frame, the tremors coming in waves every 30 seconds or so for hours on end despite the pharmaceutical cocktail meant to quell them. All the while, inside, buried deep within the emotional maelstrom brought on by my illness, lays a big kernel of the old me, observing it all in utter disbelief.

Since the onset of my disease, the divide between my essence and the body that contains it has grown from a slight fissure into a great chasm. I’ll occasionally struggle from my wheelchair to stand in front of a mirror, trying to strike a pose that suggests some semblance of normalcy, imagining that if someone were to glimpse me at that precise moment they might not guess I was so afflicted. But then I see in my reflection that my right arm has withered, the fingers on my emaciated right hand curl unnaturally inward, and my right wrist and elbow stay unbent only by my precariously lodging them against the side of my body. In shorts my legs reveal themselves to be sticks, as if they remembered who they were back in my skinny youth and decided to reprise the role. My once lean stomach has become a bulbous belly, courtesy years of sitting in a wheelchair. This is not the me that I hold in my mind’s eye, and yet this is the reality of the body I now possess, a body that will become only more and more unfamiliar with time barring some incredible medical intervention.

This decrepit circumstance has forced me to break the mind-body connection that we are so conditioned to accept as reality. Though I struggled to embrace my physical self in my younger days, I must reject the physical decay that now besets me, as for sure this defective mass of flesh and bone does not define me. My mind remains sharp, maybe too sharp, and my sense of self is more pronounced now than ever, albeit in an increasingly disembodied state. I don’t know if consciousness survives our ultimate physical demise, but I do know that the essence of who I am is increasingly independent of the physical form that maintains it.

In a strange paradox, I have become more sure of the person I am these days than I ever was back when my body was whole. I’m privy to insights I likely never would have attained if not for my unfortunate situation. It’s a strange life, this existence within an existence, but it is life nonetheless, not one I ever would have chosen but one in which holds within it not only sorrow and frustration but also still moments of contentment and sometimes even joy. Along with my sense of self those two most vital elements of life, joy and contentment, have by necessity undergone their own bits of revision, reshaped and reimagined by a me that more and more severs the connection between body and mind.

My body is revolting, and yes, you said it, it stinks on ice… Ha!

Monday, September 29, 2014

Bits and Pieces: Autumn Equinox Edition (also Tysabri, MS and HIV,viruses, relapse rates, misdiagnoses, diet, and asinine research)

Personification of Autumn (Currier & Ives lith...

Personification of Autumn (Currier & Ives lithograph, 1871) (Photo credit: Wikipedia)

Well, according to the full scale replica of Stonehenge that I have sitting in my living room (which is right next to my exact copy of the Sphinx and down the hall from my faux Taj Mahal – it’s incredible what you can fit in a 900 ft.² apartment with a little ingenuity) summer is over and autumn is now upon us. Time for packing away the seersucker, preparing for the harvest, and getting ready for the ceremonial sacrificing of virgins. Luckily, there are no virgins available in my apartment, so we’ll probably make do with sacrificing some gourmet chocolates.

Wish I could say I had an exciting summer, but this one was actually quite dull. A big shout out to Multiple Sclerosis for that one, as the beast has been heavy-handed with me these last few months. Even though I have progressive disease and the overall trajectory of my symptoms is always steadily downward, their severity does tend to inexplicably wax and wane a bit. The last few months they’ve definitely been waxing, and boy, I’m more than ready for a little wane – and I’m not talking about L’il Wayne, the notorious hip-hop artist (click here).

Alas, my replica of the Temple of the Oracle at Delphi tells me that it’s time for another edition of Bits and Pieces, my semi regular compendium of interesting MS related news and notions. Can’t argue with the Oracle at Delphi, lest mighty Zeus unleash a lightning bolt in my direction, and really, I have enough problems. So here goes…

♦ First up, some MS drug news. A study out of Italy has found that Tysabri is even more effective in real life clinical practice than it was during the trials that led to its approval for use in treating RRMS (click here). This study of 343 patients from 12 Italian MS centers found that, over time, treatment with Tysabri resulted in a 68% reduction in MS relapses, that 93% of treated patients saw no disease progression, and that 53% of Tysabri treated patients were free of any signs of disease activity. Very impressive numbers, to say the least, despite the fact that Tysabri is not without its concerns (chiefly the possibility of contracting opportunistic infections, primarily PML, a potentially fatal infection of the brain).

When Tysabri was first introduced I was highly dubious of the stuff, thinking that the drug’s dangers far outweighed its potential benefits, but I must admit that time has, it seems, proven me wrong. I personally know a quite a number of RRMS patients whose lives have been dramatically improved by Tysabri, some so much so that they refuse to come off the drug even after developing a higher risk of contracting PML. I’m still not entirely comfortable with the idea of screwing with the workings of the human immune system for years on end, and it pisses me off immensely that medical science (or at least the pharmaceutical companies) seems content at treating the disease rather than curing it, but if I was a newly diagnosed RRMS patient with a low risk of developing PML (in other words, negative for JC virus antibodies), given all of the available data starting Tysabri would certainly high on my list of treatment options. That's honestly something I thought I'd never say six or seven years ago. There are currently trials ongoing testing Tysabri on progressive disease, and it will be very interesting to see how those turn out.

♦ There’ve recently been a spate of headlines to the effect that “HIV May Help Prevent Multiple Sclerosis” (click here). The basis for these headlines is a study that looked at MS rates among people infected with the HIV virus (the virus that causes AIDS), which found that HIV-infected people were far less likely to develop Multiple Sclerosis then the general population (click here). What could be behind these shocking findings? Well, it’s certainly possible that the HIV virus itself has some kind of anti-MS properties. It’s also possible that HIV, which can do serious damage to the human immune system, suppresses the aberrant immune cells that are thought to lead to the development of Multiple Sclerosis. More intriguing, though, is the possibility that the anti-retroviral drugs given to treat HIV patients, which have become extremely effective over the last decade, may be doing something to curtail the development of MS in HIV infected people.

About a year and a half ago I wrote about an emerging theory that ancient retroviruses which have become part of human DNA over millions of years of evolution may be behind a variety of illnesses, including cancer, schizophrenia, and, yes, so-called autoimmune diseases like Multiple Sclerosis (click here). These ancient viruses are in the same class of virus as HIV, called retroviruses. Long thought to be simply “junk DNA” and merely innocuous remnants of the ancient past, it’s recently been found that some of these viral bits, which are part of every human beings’ genetic structure, might be activated by the presence of certain environmental factors (other viruses, bacteria, or toxins), and thus cause all kinds of trouble. This hypothesis provides an elegant explanation of autoimmunity, in that, if correct, it would mean that under certain conditions our own cells might act as attackers, thus initiating a response by our body's own immune system.

Could it be that the powerful antiretroviral drugs being given to HIV patients are shutting down these ancient retroviruses (called Human Endogenous Retroviruses, or HERVs), and so are preventing the HIV-infected people on these drugs from developing Multiple Sclerosis? An intriguing possibility, and one which is currently being investigated by a group in London who are using some off-the-shelf HIV drugs to treat MS patients in a trial that is now underway (click here). Additionally, another related trial being conducted by a research group in Switzerland is testing a drug specifically designed to target an ancient retrovirus that has been linked by some scientists directly to Multiple Sclerosis. This group recently released the results of a small preliminary trial which tested the drug on progressive MS patients and showed it to be safely tolerated. Furthermore, the trial demonstrated some early indications that the drug may be effective in treating the disease (click here).

This is exciting stuff which could potentially change the way we view and treat many dread diseases in some very profound ways. My gut tells me that there is really something to this research, and I only wish more time, money, and effort was being devoted towards fully exploring this hypothesis and its many implications.

♦ Yet more research on viruses and MS: a recently released study using new testing methods found that the spinal fluid of Multiple Sclerosis patients is rich in antibodies targeted at Epstein-Barr Virus (EBV) and Human Herpes Virus-6 (HHV-6), rather than against human myelin and nervous system tissues, as might be expected if MS were truly an “autoimmune” disease (click here). Epstein-Barr Virus, and to a somewhat lesser extent HHV-6, have long been suspected in playing some role in the MS disease process. Fascinatingly, both of these viruses have been implicated in activating HERVs , the ancient retroviruses that I discussed in the previous item. Could it perhaps be that in genetically susceptible people, common infections such as EBV (which is carried by more than 90% of the population) can turn on DNA switches that lead the immune system to attack tissues of the central nervous system? In the decades before the autoimmune theory took hold, much of MS research was directed at finding the presumed infectious cause of the disease. Perhaps these now discounted theories were in fact on the right track, and strict adherence to autoimmune dogma over the last 20 years has led MS research astray. Again, clues like those divulged by this study demand that more attention be paid to this area of research.

♦ Here’s one that belongs in the MS version of Ripley’s Believe It or Not. The gold standard of medical research is the double-blind trial, in which one group of patients is given whatever treatment is under study and another is given a placebo (such as a sugar pill or saline solution), so that the responses between the two groups can be compared. In MS research, one of the most common measures by which an experimental drug’s efficacy is judged are annual relapse rates, the number of MS attacks experienced by relapsing remitting test subjects over the course of a year. Strangely, over the last two decades the annual relapse rates of patients in the placebo arms of late stage drug trials has dropped by half (click here). That’s right, since the 1990s the rate of relapses experienced by patients being given “fake” drugs has declined by 50%, while the rates of people getting MS worldwide have gone up (click here). And no one knows why. Isn’t that reassuring?

♦ Some more reassuring news: I came across a list of the 15 most misdiagnosed diseases (click here), and wouldn’t you know it, our good friend and close confidant Multiple Sclerosis is right up there. Given the many mysteries surrounding MS and the fact that there is no diagnostic test that definitively determines whether or not a patient does indeed have MS, this really shouldn’t come as much of a surprise. Truth is, most experts peg the misdiagnosis rate of MS at somewhere between 5%-15%, meaning that perhaps 1 out of 10 of the MS patients reading this don’t actually have the disease. There are literally dozens if not hundreds of diseases and conditions which can mimic MS. Here’s an academic paper on the subject, which lists at its end 100 illnesses that can be mistaken for MS (click here). It’s easy to drive yourself crazy with such information, so be careful, but if you suspect you may have been misdiagnosed, there’s a reasonable chance that you could be right.

♦ The relationship between diet and MS has become a very hot topic of late. Through the years, many different diets have been said to be “anti-MS”, most often low-fat or low-carb diets rich in anti-inflammatory and antioxidant foods. In fact, I’m currently trying the Paleo diet, a way of eating that is supposed to resemble the dietary habits of our ancient ancestors. The theory is that the function of our digestive systems evolved over the millions of years that our forebears were hunter gatherers, and that much of what we’ve taken to eating since the discovery of agriculture some 10,000 years ago is actually bad for our health. The Paleo diet cuts out all sugar, dairy, wheat, and some of the most common cultivated crops. This means that people on the diet can’t eat bread, milk, cheese, rice, potatoes, corn, or many of the other staples of the modern menu.

Given the fact that I’m giving Paleo a try, my interest was quite peaked by this article (click here), which details the results of a study that followed dietary habits of 185,000 women over 20 years and found that diet seems to have absolutely no impact whatsoever on whether or not they developed Multiple Sclerosis. In fact, the numbers appeared to show that those eating what is considered to be an unhealthy Western diet developed MS in lesser numbers, although this trend did not reach statistical significance.

Now, I know there are many patients who swear that a radical change in diet has noticeably lessened the impact of their disease and some have gone as far as to claim that diet can even cure MS, and I’m certain that most of these claims are made in all earnestness. I'm not saying that this study is the last word on the subject, but it should provide food for thought (pun intended). At the very least a healthy diet is, well, healthy, and that can only be a good thing especially for people suffering from chronic illness. And for those who are wondering how I’m doing after more than two months on the Paleo diet, I’m sorry to report that I’m feeling pretty crappy, worse, I think, than before starting the diet. I have dropped a few pounds, which is definitely good since I was beginning to resemble a walrus (sitting in a wheelchair does nothing for the physique), but given my lack of results otherwise I believe my time eating like a caveman may be drawing to a close. I’m thinking that the next diet I try might be one of my own invention, which I dub the “Nothing But Philly Cheesesteaks Diet”. Probably not very healthy but… Yum.

♦ Okay, time for yet another edition of ASININE RESEARCH! Once again, I present another in apparently endless stream of studies that that delve into the ever enigmatic conundrum that is the relationship between multiple sclerosis, difficulty walking, and falling down. This topic really seems to float the boats of top-notch medical researchers who apparently can’t get enough of publishing papers probing the seemingly unfathomable relationship between a crippling disease and its patently obvious effects on ambulation.

Today’s asinine research paper is tantalizingly titled “Concern about Falling Is Associated with Step Length in Persons with Multiple Sclerosis” (click here). The abstract starts out with this sentence: “Fear of falling is one of the major concerns of people with multiple sclerosis.” Yes, yes, a dazzling observation! And fear of ruining ones undergarments is one of the major concerns of people suffering from explosive diarrhea. From this auspicious start, the paper goes on to detail research looking at how concern about falling alters the way MS patients walk. While investigators suffering from severe oxygen deprivation might assume that MS patients stride like Rockettes and strut about with all of the bravura of a young Mike Tyson, after much mumbo-jumbo about “spatio-temporal parameters of gait” and “gait asymmetry patterns” this study instead shockingly finds that multiple sclerosis patients tend to walk slower and take smaller steps than their healthy counterparts, and that this astounding effect is greater in those with a higher fear of falling. The study concludes by postulating that measuring step length might be a good tool for assessing the level of fear of falling in people with MS. I suppose assessing the level of terror on their faces is just too bothersome.

Did it ever occur to the researchers that MS patients walked slower and took smaller steps as a result of the disease, and that this might in fact be the reason behind their fear of falling and not the other way around? I certainly don’t remember having a healthy fear of falling before, you know, the disease took a hammer to the connection between my brain and my legs and left me no choice other than to walk slower and take smaller steps. In fact, these days if my steps get any smaller or my walking gets any slower my attempts at ambulation might better be termed "standing still". Yes, this all makes for a frightening experience, but it's not the fear that keeps my legs from moving, it's some little-known phenomena called "weakness" and "paralysis". Sheesh.

♦ It’s become my custom over the past several Bits and Pieces posts to end with some music from the “Neo-Soul/Retro-Soul” movement. Words can’t express how smitten I am with much of this music, which never fails to put some funk in my junk, some glide in my stride, some pep in my step, and some growl in my prowl. Hey, wait a minute, as mentioned above these days I can barely manage a stride, step, or prowl, so I’ll have to amend that – this funky stuff puts some chimp in my limp, some jumble in my stumble, and some gall in my fall. Can I get an Amen? Hallelujah!

The following ditty is by St. Paul and the Broken Bones, a band I was lucky enough to see at a free concert outside of Lincoln Center a few months ago. I went to the show primarily to see Charles Bradley, who I featured in a previous Bits and Pieces, but I was unexpectedly blown away by these guys, who I’d never heard of before they took the stage. As I mentioned earlier, this summer wasn’t a particularly terrific one in my book, but this show was definitely a highlight…

Thursday, September 11, 2014

Supplements, My Supplements

Arabic herbal medicine guidebook

Arabic herbal medicine guidebook (Photo credit: Wikipedia)

Using natural supplements to help treat MS is always a topic of much interest amongst patients. In the face of the sometimes daunting side effect profiles of the pharmaceutical drugs approved to combat the disease, the use of herbs and other natural substances, widely perceived as being more benign than the immunosuppressant/immunomodulating pharmaceutical products, holds great appeal for many dealing with Multiple Sclerosis. MS research headlines regularly trumpet one natural remedy or another as having been discovered to slay or at least tame the MS beast, and stories of miracle cures abound, percolating their way around the Internet. It can be awfully hard to separate the wheat from the chafe, so to speak, making the whole topic of herbal remedies a great big ball of confusion.

I’m very fortunate that the MS clinic at which I’m a patient, The International Multiple Sclerosis Management Practice here in New York City (click here), has on staff a naturopathic doctor specializing in the treatment of neurologic illness. Dr. Deneb Bates is one of the sharpest physicians of any specialty that I’ve had the pleasure of working with during my experience as an MS patient, and with her guidance I take a variety of herbal remedies and concoctions designed to alleviate my symptoms as much is possible. I can’t say that the witch’s brew of natural substances that have become part of my daily routine has put the brakes on my disease progression, since my illness seems intent on defying any efforts to rein it in, but I hope they may have at least slowed my progression a bit, and I’m certain they’ve at the very least helped to dampen some of the symptoms of my condition.

Before I spill the beans (ha ha, just a little natural supplement humor) on the rather long list of supplements I take, let me first state that mine is a very atypical case of MS, if it is even MS at all. I’ve been poked and prodded by some of the world’s best MS specialists, and none has been able to come up with an absolutely definitive diagnosis for whatever it is that ails me. Clinically my disease presents like Primary Progressive Multiple Sclerosis (PPMS), but many of my test results leave physicians scratching their heads. In fact, after some disagreement, my neurologist and I have settled on calling my disease PPMS with the caveat that in my case those initials stand for the “Peculiar Paralysis of Marc Stecker”.

Additionally, I have several complicating factors that make me an especially difficult patient to treat. I have a wide array of endocrine problems, stemming from autoimmune thyroid disease and an increasingly faulty pituitary gland (also possibly due to autoimmune problems). My many hormone imbalances can result in symptoms that mimic those of neurologic illness, such as fatigue and muscle weakness, making it sometimes hard to figure out just what physical defect is causing which misery.

I also suffer from Avascular Necrosis (also called AVN), which is a very rare side effect of intravenous steroid use. AVN causes the bones in the major joints to perish, at which point they quite literally crumble and, as you might imagine, cause immense pain. I have AVN in both hips and both shoulders, which means that I’ve been living the last five or six years with the equivalent of two broken hips and two broken shoulders. To call the condition painful would be a gross understatement. If my overall health were better I’d have had both hips replaced years ago, but due to the ravages of MS and all of my hormonal deficiencies undergoing such major surgery would be extremely risky. Instead, I live each day gritting my teeth through pain that varies from uncomfortable to excruciating to, well, there really are no words for it, though at times long and creative strings of obscenities attempt to fit the bill. In order to try to keep my AVN pain down to a roar, I’m on very strong anti-inflammatory medications as well as the occasional opioid painkiller, all of which can cause problems of their own, such as liver and kidney toxicity.

Lastly, careful screening of my cerebral spinal fluid by my MS clinic’s on site laboratory has shown that I have extremely high levels of oxidative stress and extremely low levels of natural antioxidants in my central nervous system, the combination of which may be contributing to my ongoing neurodegeneration. Oxidative stress occurs as the result of the body burning nutrients to create energy, the process of which releases nasty little molecules called free radicals that can smash through cell walls and damage vital tissues and organs (click here). Think of these free radicals as the body’s equivalent of the noxious exhaust fumes put out by an automobile engine when it burns gasoline. The human body is normally equipped with natural antioxidants that soak up many of these free radicals, but even in the healthiest people some antioxidant supplementation isn’t a bad idea. In my case, with my natural levels bizarrely low, it’s just about requisite that I try to boost these levels with antioxidant rich supplements.

As you’ll see, many of the natural supplements on my list are anti-inflammatories and/or antioxidants, which can be helpful to all MS patients (a major component of the MS disease profile is inflammation, after all) but are especially so in my case due to my problems with AVN and low levels of natural antioxidants. Some of the other items on my list are targeted at helping kidney and liver function, which can be compromised by many of the medications MS patients take to help control their symptoms. None of these supplements should be taken without first consulting your doctor. Don’t be fooled into thinking that anything thought of as “natural” is without the potential to do some harm. Indeed, some of these supplements are strong medicines, and can adversely interact with pharmaceutical meds, making it vitally important that their use not be embarked on as a do-it-yourself adventure.

Okay, with that rather long prelude out of the way (is it no wonder I shy away from twitter? I don’t think I could say hello in 140 characters) here is the list of natural supplements I take each and every day, in no particular order. I’m intentionally not including the dosages to discourage folks from simply taking these things willy-nilly, without first consulting a physician. Please don’t hate me…

Vitamin B Complex - Vitamin B comes in many forms, most of which play an important role in the function of the central nervous system and metabolic processes (click here). In fact, people with severe vitamin B deficiencies are sometimes misdiagnosed as having Multiple Sclerosis. Since the most obvious symptom of my disease is a slow and steady decline of neurologic function, making sure my body is well stocked with Vitamin B just makes sense.

Green Tea Extract - as the name implies, this stuff is derived from green tea, which is tea in its unfermented form (unlike black tea). Green tea is among other things an extremely effective antioxidant, and has been shown to be helpful with cognitive functioning (click here). You could likely get the same benefit from drinking 5 or 6 cups of green tea a day, but given my bladder frequency/urgency issues, if I were to go that route I’d have to spend the better part of my day in the bathroom, and might, in fact, never stop peeing. So, I choose to take the stuff in pill form instead.

Curcumin - curcumin is the active ingredient in tumeric, the spice which is the basis of curry powder. Curcumin is both a very strong anti-inflammatory and antioxidant (click here), and is purported to have a very long list of health benefits. Interestingly, countries with a curry rich diet often have very low rates of autoimmune diseases, but of course other factors may come into play.

Milk Thistle - milk thistle is a flowering plant related to the daisy family, and is very effective in helping to maintain proper liver functioning (click here). Since I take many medications that are metabolized in the liver, my liver function has always been of great concern to my physicians, and milk thistle has been effective in keeping my liver enzymes within the normal range ever since I started taking it. Before I started taking milk thistle, blood tests would often reveal my liver enzymes creeping above acceptable levels. So, milk thistle, good stuff.

Pellitory of the Wall (Parietaria) - what milk thistle does for the liver, this stuff does for the kidneys. Because of the problems in my hips and shoulders, I take a very powerful, prescription only nonsteroidal anti-inflammatory (NSAID) which helps keep the pain in my joints to manageable levels. Unfortunately, this drug can wreak havoc on the kidneys, and my pain management Dr. is always hyper concerned about checking my kidney function via blood tests. Before I started taking Pellitory of the Wall my kidney function tests would often veer into dangerous territory, but after consulting with my naturopath and starting on Parietaria my kidney function numbers have all fallen comfortably within normal ranges. My pain management doctor. was so shocked by this reversal in kidney function levels that he insisted on calling my naturopath to find out more about the stuff. Pellitory of the Wall has also been used traditionally to treat urinary tract infections, rheumatic elements, and some circulatory system problems (click here). Again, good stuff.

Licorice Solid Extract - one of my endocrine problems is low levels of cortisol, one of the body’s natural steroids which is manufactured by the adrenal glands. Licorice is very effective in helping to maintain adrenal function (click here), and taking it has in fact increased the level of cortisol circulating in my blood. Licorice solid extract is a concentrated form of natural licorice and is very effective in helping to deal with fatigue, which is a well-known and very problematic MS symptom. This stuff isn’t to be fooled around with, though, as it can raise blood pressure and heart rate, in some people to dangerous levels. Be aware that most licorice candy has little if any real licorice in it at all, so eating lots of Twizzlers won’t have the same effect.

Eleuthero Solid Extract - although Eleuthero is sometimes referred to as Siberian Ginseng, this root is only a very distant cousin to the more common Asian and American ginsengs. In naturopathic terms, Eleuthero is considered an adaptogen (click here), a substance used to keep the body in balance. Eleuthero is purported to help with stress-related conditions, colds and respiratory infections, immunologic functions, and fatigue, among other uses (click here). I’m taking it because I have a long history of chronic sinus infections, as well as to try to counteract my usual host of endocrine problems. I’ve found that Eleuthero does seem to help with my MS and/or endocrine related fatigue.

N Acetyl Cysteine (NAC) - NAC is an amino acid that is a powerful antioxidant (click here). The substance is a precursor to glutathione, which is the body’s own natural and most powerful antioxidant, used to combat all of those nasty free radicals that result from the body metabolizing food into energy. As I mentioned previously, tests of my cerebral spinal fluid have shown me to be severely deficient in natural antioxidants, so, in theory, I stand to benefit from as much antioxidant support as I can get. NAC is also known to have antibiotic and perhaps antiviral properties.

L-lysine - L-lysine is an “essential” amino acid that cannot be manufactured by the body. It’s considered very effective in helping with the symptoms of osteoarthritis and is supposed to have prominent antiviral properties (click here). Many researchers believe that a virus or viruses play some role in the MS disease process. L-Lysine also plays an important role in the production of hormones, antibodies, and enzymes. The stuff additionally aids in the production of collagen, which is essential for the health of bones and skin, and it shows up in many skincare products.

Boswellia Extract - Boswellia is also known as frankincense, which, according to the Bible was one of the gifts the three wise men brought to the baby Jesus. Hey, if it’s good enough for the baby Jesus, it’s good enough for me. I’m hoping that if I take enough of it I may someday be able to walk on water, which would really be a miracle since I currently can’t even walk on solid ground. Boswellia is a powerful anti-inflammatory agent, and it also has anti-oxidative properties (click here). Like some of the other natural supplements on this list, Boswellia has also been shown to have germ fighting properties. Inflammation, oxidative stress, germs, BAD. Boswellia, GOOD.

Vitamin D - by now, I’m sure most MS patients have heard of the importance of vitamin D in helping to potentially ward off the disease in those who don’t already have it and perhaps dampen its impact on those who do (click here). Depending on the level of vitamin D in a patient’s blood, it’s pretty much generally agreed that most patients should be taking some amount of Vitamin D supplementation. Careful, though, as taking too much vitamin D can be toxic, so you don’t want to overdo it.

MitoQ - this supplement is basically a supercharged version of CoQ10, a very powerful antioxidant. MitoQ is specifically targeted at mitochondria, organelles that are known as the “powerhouse of the cell” which play a vital role in metabolic processes. Recently, some studies have shown MitoQ to be remarkably effective in treating the mouse model of MS (click here). As with all MS research done on mice, the results of these studies should best be taken with a few grains of salt, since the mouse model of MS is an absolutely horrible stand-in for the human version of the disease. That said, MitoQ’s antioxidant properties alone make it a good option for someone like me who has been shown to be sorely lacking in natural antioxidant levels.

Magnesium Glycinate - repeated blood tests have shown me to have low levels of magnesium, a mineral which is important to the health of cells, nerves, muscles, bones, and the heart (click here). Additionally, magnesium has laxative properties, which make it a good candidate for those of us suffering from the all too common MS pooping problems. Or, more correctly, lack of pooping problems.

Krill Oil - krill oil is a form of fish oil, made from shrimp like creatures called, you guessed it, krill. Like fish oil, krill oil is rich in omega-3 fatty acids, which have been shown to lower cholesterol and are also suspected to help ease MS symptoms (click here). The major advantage that krill oil has over fish oil is that the stuff made from krill doesn’t lead to fishy tasting burps and an unpleasant aftertaste. One of my longtime mottos as always been “whenever possible, avoid fishy burps”, so krill oil helps keep me true to my credo.

Well, there you have it, 14 dietary supplements that are part of my daily routine. Please consult your physician before starting any of the above-mentioned supplements. Mother Nature can be a beautiful maiden, but one not without teeth.

Most MS patients probably don’t need to take nearly as many supplements as I do, but since I have problems compounding my problems, it’s my hope and belief that at least some of the supplements are contributing to making my life more livable. As I stated previously, in addition to my neurologic problems I also have all kinds of endocrine dysfunctions as well as crumbling bones in my hips and shoulders, so I can certainly use all the help I can get.

Yes, when it comes to MS, I hit the triple jackpot – my initials are MS, I have MS, and I am a mess. Thank you, universe…

Tuesday, August 26, 2014

The Problem with Progression, Revisited

English: Cropped version of :Image:Domino effe...

English: Cropped version of :Image:Domino effect.jpg (Photo credit: Wikipedia)

The good folks who administer the website (click here) and I have reached an agreement to publish 20 essays from the Wheelchair Kamikaze archives on their site. is a wonderful resource for MS patients and those who love them, filled with the latest MS news as well as insightful articles and essays by folks dealing with the disease in all its forms. Lots of good stuff there, all of it high-quality. Best as I can figure, the fact that they decided to include some of my essays must be due to some sort of clerical error.

The initial WK essay published on is a post that first appeared on this blog in July, 2009, entitled “The Problem with Progression” (click here). Back then I’d only been writing Wheelchair Kamikaze for about six months, and had been in a wheelchair for one full year. At the risk of stating the obvious, the essay deals with the progressive nature of Multiple Sclerosis disability. In it, I state that “the problem with progressive neurologic diseases is that they progress”, a sentiment which may seem self-evident but carries quite a wallop. When I was first diagnosed I listened in a befuddled haze as the doctor talked about the need to try to minimize something he kept referring to as disease progression. I’d no idea what he was talking about, but I sure would find out in the months and years to come.

Even in those early days it was clear I had progressive neurologic disease, with few if any viable treatment options available. Since then, new disease modifying therapies and even some alternative approaches have proven to have significant positive impact on many afflicted with the relapsing remitting form of MS, but though the attention of researchers is finally shifting to progressive disease there remains precious little in the way of effective therapies for us “progressives”.

The roughly 6 years between my initial diagnosis and my writing “The Problem with Progression” had seen the disease wreak havoc with my life. I’d gone from having a slight intermittent limp to requiring first an ankle brace, then a cane, and finally an electric wheelchair. I’d been busily employed in a high profile industry but was now 2 ½ years into my forced retirement, had seen my social life diminish from flame to flicker, had witnessed my body betray me in ways I’d never thought possible. Such a tremendous amount of upheaval in such a relatively short amount of time, my body caught tight in the grip of a seemingly insatiable beast, my mind buffeted by an emotional whirlwind, my intellect left to desperately try to sort it all out.

Given the alarming rapidity of my disease progression, I wrote about the difficulty of processing the losses already visited when the prospect of losses to come loomed ominously on the horizon. The flipside of looking back to mourn the wounds already inflicted is looking forward and anticipating the insults yet wrought, leaving little room in which to find some measure of solace.

The opening paragraph of “The Problem with Progression” talks about the realization that I’d very likely soon need to use my wheelchair inside my apartment, when at the time the mechanical monster had been used exclusively out-of-doors. Well, that little prediction did indeed soon come to pass, and now the notion of my walking from the bedroom to the living room seems about as likely as my being elected Pope (quite the long shot for a Jewish guy from Queens).

Later in the essay I talked about how annual events had become markers of my disease progression, times when I could look back one year and assess the damage done over the previous 12 months. I used the example of the Super Bowl, wondering if and when I’d no longer be able to watch it from the comfort of my living room couch, or even be able to manipulate the TV remote. It’s now been at least four Super Bowls since I’ve watched the NFL championship game – or anything else, for that matter – from that couch. Instead, all of my TV viewing these last few years has been done from the vantage point of my wheelchair, which is at once both a constant reminder of my imprisonment by the demented captor that is MS, and the key that keeps me from being completely swallowed up by the dungeon of disease.

The six years that preceded my writing “The Problem with Progression” witnessed MS completely reshape my existence in dramatic fashion. The five years since, though, have seen the changes become much more incremental, but in some ways perhaps even more insidious. The psychological hurdles presented by being forced by the disease to totally change almost every aspect of my day-to-day existence in the half-dozen years following my initial diagnosis were big-ticket items, readily identifiable monoliths with which to emotionally grapple.

Now, although the disease continues to progress largely unabated, the changes are more discrete, much less apparent to anyone but me and my closest observers – increasingly clumsy fine motor skills in my one still usable hand, a sometimes crushing fatigue, muscle spasms that pound away in the dead of night. Most of the blatantly obvious milestones have already been reached, but each passing year finds me still weaker and less able. Creative adaptations allow for a semblance of equilibrium in quality of life, but at some point, barring some much hoped for intervention, the mounting deficits will defy adaptation. The difference between the earlier, more obvious stages of my disease progression and that of these later years is kind of like being dragged under water. Once your head goes under the surface, all anybody looking from above sees is that you’ve submerged. The only one who can feel the increasing pressure and mounting darkness of being dragged deeper and deeper into the murky depths is you, the marvels of fresh air and sunlight drifting off as if they were only half remembered fragments of a long-ago dream.

It’s testament to the power of the human spirit that life beneath the waves still holds elements of wonder, sparks that continue to shine brightly once the effort is made to clear away the shade. Though the disease progresses so too does the desire to defy it, to stake a claim in a world turned upside down. I may not get out and about as much as I used to, even in the wheelchair, and the rigors and stresses of the disease – both physical and mental – may dictate submission to constraints I long to throw off, but I’m still here, dammit, occasionally licking my wounds but nowhere near willing to raise the white flag. Dragged under the sea of disability I seem to have managed to grow gills, and though I acknowledge and accept that there are depths below which there can be no survival I maintain hope that somehow, someway, I’ll break the grip of MS and once again bob to the surface. In the meantime I’ll simply do the best I can, even if this year’s best pales in comparison to that of only a few years ago. The problem with progression may indeed prove to be unsolvable, but it won’t be for lack of trying.

Monday, August 11, 2014

Man Bites Dog (or, MS Patient Beats Insurance Company after Stem Cell Transplant, to the Tune of $400,000)

(c) GoGraph / lhfgraphics
Oh, the many pleasures of Multiple Sclerosis. In addition to the physical and psychological toll taken by the disease, MSers also have to deal with a medical establishment that at times seems purposely set up to make being sick as hard as possible. Here in the USA, one of the most infuriating components of that medical establishment is quite often the private health insurance companies, upon whose whims many patients rely on to pay for such superfluous luxuries as vital medications, essential treatments, and indispensable mobility devices.

In my 11-year career as a patient with a progressive disabling disease I’ve been subject to an almost countless number of frightening medical procedures, the prospect of any one of which would have made the healthy me ruin my pants. Despite the horrid nature of some of these procedures – from needles in the spine to having tubes the size of fire hoses stuck into my veins to tests involving electric shocks of varying intensities – I’d have to say that the source of some of my most prolonged periods of agony have been long and drawn out battles with insurance company telephone tormentors who seem trained by the spirit of Marquis de Sade himself to extract as much psychic pain as possible while doing their god-awful best to avoid providing even the merest dribble of satisfaction.

Given my numerous nerve-racking experiences dealing with the insurademons, it was with great relish that I read the heroic man versus insurance company saga of Mr. Dave Bexfield, which was recounted in the August 3, 2014 edition of the New York Times (click here). I’ve been acquainted with Dave, at least in the virtual sense, for several years through our interactions on various Internet sites, forums, and email. We finally actually spoke to each other last week, as I was preparing this piece. Dave is the creator of the website ActiveMSers (click here), a vital resource for MS patients looking for inspiration and info on how to stay as physically active as possible. The site includes Dave’s blog, interactive forums, tips and tricks, and reviews of all kinds of gear designed to help people with MS stay in the game, so to speak.

Back in 2010 Dave underwent HSCT (hematopoietic stem cell transplant), a stem cell procedure that, in a nutshell, gives MS patients (or patients with a variety of other so-called autoimmune disorders) a new immune system by first destroying their old one through the use of powerful chemotherapy agents, and then resetting it via a stem cell transplant. For more info on the procedure, please refer to my last Wheelchair Kamikaze post, in which I wrote extensively about HSCT (click here). The treatment successfully put the brakes on Dave’s very aggressive relapsing remitting multiple sclerosis, but also left him $200,000 in the hole, a situation which precipitated an epic four-year Battle Royale with his insurance company.

In order to fully understand the majesty of Dave’s victory over his insurance company, I think a little background is in order. Back in 2005, Dave experienced his first MS symptoms, in the form of vision problems and strange sensory experiences. A few months later he suffered his first full-blown relapse, which resulted in the entire right side of his body going numb. After going through the usual diagnostic workup (MRIs, spinal fluid analysis, etc.) he received a verdict of MS. Over the next four years, despite being on the disease modifying therapies Copaxone, Rebif, and finally Tysabri, Dave’s disease slowly progressed, with intermittent relapses, until very suddenly a number of severe relapses put his MS progression into hyperdrive, leaving him at times barely able to take a step.

Just as he was reaching the point of desperation, Dave learned of an National Institutes of Health (NIH) sponsored HSCT study being conducted at the MD Anderson Cancer Center in Houston, Texas. He was accepted into the study, and was deemed the ideal candidate because of the very aggressive nature of his RRMS and his corresponding diagnostic test results. Unfortunately, after receiving this good news came some bad. Due to cuts in the federal budget, the National Institutes of Health, though still involved in the study, could no longer pay for the treatment. If Dave was to participate he would have to cover the entire $200,000 price tag himself. Yikes, to say the least. Dave lobbied his insurance company for financial assistance, but his pleas were rejected outright because of the experimental nature of HSCT treatment. Ultimately, Dave managed to cobble together the $200,000 by draining his savings and through the generosity of his immediate family.

Dave underwent HSCT in 2010, and though the treatment itself was no picnic, it did successfully slam the brakes on his multiple sclerosis, which had turned so aggressive that Dave believes the treatment saved his life. He’s had absolutely no relapses or further progression of his disease in the four years since undergoing HSCT. Of course, there’s no guarantee that his disease won’t mount a counteroffensive at some point in the future, a possibility which he acknowledges, but what MS patient wouldn’t gleefully accept at least a four year truce with their disease, during which the progression of their illness was stopped cold, free from drugs or any other form of treatment? You can read more about Dave’s HSCT experiences on his website (click here).

One might think that this would be the happy end of the story, albeit one with quite the hefty price tag. Just a few months after his stem cell treatment, though, Dave’s insurance company suddenly decided that it would indeed start paying for some forms of stem cell therapy for multiple sclerosis patients, though no such therapy had received any kind of official approval for this use. Dave contacted the company in an attempt to get reimbursed for his treatment expenditures, but was told that he was too late, and that the timing of his claim was simply “unfortunate”. Thus began a gargantuan four-year battle between Dave and his insurer, one which found Dave, with dogged (some might say maniacal) persistence, going to extreme measures to try to prove his case. Through the magic of Google he managed to uncover confidential files that directly contradicted much of what his insurance company was telling him – that they were merely following government mandated guidelines, and thus really had no choice in the matter – and Dave even went so far as to file a Freedom Of Information Act request to uncover yet more evidence of malfeasance on the part of his insurance company. You can read a more extensive, blow-by-blow account of the cage match between Dave and his insurance company on his website (click here).

During his four year struggle with the Insurazombies, Dave contacted a consumer advocate reporter at The New York Times, David Segel, who calls himself “The Haggler”. The Haggler lobbied the insurance company on Dave’s behalf, at first with no luck. Some months later, Dave then provided the Times reporter with some newly uncovered and extraordinarily damning evidence against the insurer, and The Haggler once again contacted the insurance company’s top executives, this time with proof that the company had lied not only to Dave but to the New York Times as well. As if by magic, a few days afterwards Dave found himself having lunch with both the President and the CEO of the $2 billion a year insurance company, during which they informed him that they had, by the good graces of the universe, suddenly experienced a change of heart; not only would they pay Dave the approximately $200,000 cost of the HSCT procedure (which, incidentally, is less than they would have spent on him by now for FDA approved MS medications if he were still taking them, which he certainly would have had he not undergone HSCT), but also the interest that the money would have accrued over the past four years, which came to just about another $200,000! Yes, the end result of Dave’s single-minded crusade to get his due was a check in the whopping amount of slightly over $400,000. Score one (or 400,000) for the good guy…

This David Bexfield versus Goliath story is an extreme example of the trials and tribulations many patients with chronic diseases face when trying to deal with their insurance companies. The problem boils down to a basic conflict of interest: though the insured are the insurance companies’ customers, they are also the determining factor in how much revenue these companies ultimately generate, even if they operate as nonprofit organizations. The less money an insurance company has to pay out to its customers, the better its bottom line. In a world where the profit motive trumps all else, this dynamic can set up some dicey situations for sick people trying to get the best health care possible, and even for those just trying to get the basic necessities required to live with their disease.

My own experience with health insurers has been almost schizophrenic. At times these companies have been incredibly cooperative, yet on many other occasions they seemingly took their tactics directly from the handbook of the Spanish Inquisition, making the prospect of dealing with their telephone representatives as appealing as an invitation to a potluck dinner at Hannibal Lector’s place. I can identify no rhyme or reason behind these vacillations in the behavior of insurance companies. In fact, many times they seem counterintuitive.

For example, this past fall, my insurer unhesitatingly approved my being treated with a rarely used and extraordinarily expensive drug, to the tune of $150,000 (the treatment turned out to be an absolute disaster, which you can read about by clicking here). Yet, only a few months before, this very same company had me alternately begging, screaming, whining, wailing, bellowing, whimpering, and very nearly bursting several very important blood vessels while trying to get approval for a new wheelchair, without which I would have had to change the name of this blog to Bed Kamikaze. The twisted and convoluted course of my six-month struggle to get a piece of gear that was an absolute necessity at times had me questioning my own sanity as well as the very notion of a just universe, and whether or not I might somehow have been drafted into the dyspeptic nightmares of a sadistic surrealist who had eaten one too many enchiladas right before bedtime.

My wheelchair saga played out over an innumerable number of phone calls, and it often seemed as if the Insurafiends were inventing new tactics and excuses even as I was talking to them. My wheelchair provider was “out of network”. Yes, but I had out of network coverage and was willing to pay the portion not covered by my insurer. Paperwork faxed to the insurance company mysteriously disappeared in the Bermuda triangle that apparently existed between my wheelchair vendor’s fax machine and theirs, and when by some miracle it was finally received on their end (with confirmation), it was inevitably lost “in the system” or found to be lacking some key bit of information or arcane equipment code, thus requiring the process to begin all over again.

Once the paperwork was in order, the Insuraschmucks suddenly decided that the specifications of the chair I had chosen were outside of acceptable parameters, and so couldn’t be covered. Mind you, it was the exact same model of chair I’d been using for the past five and half years, only with some added functionality made necessary by the increased level of disability I had accrued through the intervening years. I was told I could appeal the decision to some higher level of Insurabastards, which of course I did. After violating their own self-imposed deadlines for decision-making several times, the senior Insurapricks deemed that, yes indeed, my chosen chariot would be covered thanks to my physical decrepitude, as vouched for by my neurologist. And then came the folly of all follies; the Insurascum insisted that they couldn’t reveal how much money they’d reimburse until the chair was actually ordered, but how could I place an order for the chair until I knew whether I’d be on the hook for $1000 or $20,000? Arghhh…

In the years since my diagnosis, I’ve learned that all of the convoluted tactics employed by the health insurance companies to keep from paying legitimate claims can be boiled down to three words: delay, delay, delay. Their goal is quite simply to wage a war of attrition, frustrating the claimant with technobabble, feigned incompetence, and arbitrary rules and regulations until the sick person gives up due to frustration, physical and mental exhaustion, or the mistaken belief that they are somehow in the wrong. The insurance companies have nothing to lose by playing these games; the longer they hold onto your money the more interest they earn on it, and in fact many if not most claimants do eventually wave the white flag after months or years of interminable mindbending insurabullshit.

All of this corporate hornswaggle would be bad enough if it were employed only on the hale and hearty. However, the hale and hearty aren’t typically the ones filing claims with their health insurance companies. During the trench warfare in which I was forced to engage in order to get a new wheelchair, in times of desperation I would remind the Insurabeasts on the other end of the line that they were talking to somebody who was just about three quarters completely crippled. And that this cripple was only trying to get himself a new wheelchair, which due to my progressing crippledness had become an vital requirement. It wasn’t as if I was trying to get them to pay for a spa vacation in Shangri-La. No matter, rules are rules, even when they are invented, bent, and broken by the very people spouting them.

So, three cheers for Dave Bexfield, the man who managed to topple Goliath while also landing a solid right hook on the chin of his disease. Give thought, though, to those poor souls who through no fault of their own don’t have any health insurance, and are left to somehow fend for themselves in the world of the Multiple Sclerosis Industry and its hyper inflated prices. I’m sure those in countries outside of the US, who don’t have to deal with private insurers, have their own horror stories and headaches, both literally and figuratively. There just seems to be something sadly broken in a world where sick people have to actively fight not only to try to get better, but often just to maintain their sickly status quo. Good grief…

Tuesday, July 29, 2014

HSCT – Will This Form of Stem Cell Therapy Soon Become the Standard ofCare for Many MS Patients?

English: Cervical spine MRI with enhancement s...

English: Cervical spine MRI with enhancement showing multiple sclerosis (Photo credit: Wikipedia)
Hematopoietic Stem Cell Therapy, now there’s a mouthful. More commonly known by its initials, HSCT, this form of stem cell treatment, first tried on MS patients back in the mid-1990s, is beginning to demand widespread attention from doctors and patients alike. Why? Well, one recent study found that when applied to properly selected patients, nearly 80% showed no sign of multiple sclerosis disease activity five years after treatment (click here). No relapses, no new MS lesions, no disease progression – none. Eye-popping results to say the least, all the more so given the fact that these patients were treated on a one time only basis with no follow-up drugs or therapy required. Results like these have led even some mainstream MS neurologists to begin looking at HSCT as perhaps evolving into the standard of care for many patients in the not-too-distant future.

With growing momentum, stem cell therapies of all types are creating a huge buzz in the MS community. While one form of stem cell therapy – that intended to regenerate damaged nervous system tissue – is clearly still in its experimental infancy, another, hematopoietic stem cell therapy, which seeks to reboot the immune system, has been used on MS patients for almost 20 years. Early attempts at using HSCT to treat MS, though at times producing encouraging results, were fraught with danger, with as many as 10% of test subjects dying as a direct result of the procedure. Recent refinements in technique, better patient selection, and a growing knowledge base are now bringing HSCT closer to mainstream use as efficacy rates have soared and mortality rates have dropped dramatically. In the case of the best treatment centers, mortality rates have dropped below 1%, with no deaths reported over the last five or so years.

It’s very important to understand that there are currently two wholly separate and completely different approaches being explored for using stem cells to treat multiple sclerosis. Both hold tremendous promise but go about their business in entirely different ways, and care must be taken to never confuse the two. Regenerative stem cell therapies, almost all using some form of mesenchymal stem cells, seek to repair brain and spine tissues damaged by MS, while HSCT is focused entirely on the immune system and does not directly address damaged nervous system tissues at all. This post will deal exclusively with HSCT. For more info on the differences between these two stem cell methodologies, and more details on the experimental regenerative therapies, please refer to a previous overview of stem cell therapies for MS that appeared on Wheelchair Kamikaze last fall (click here).

So, first things first – what exactly is HSCT? In practice, HSCT is very similar to the bone marrow transplants that have been used to treat patients with leukemia and other cancers of the blood for decades. As a therapy for multiple sclerosis, the process begins by collecting a patient’s own stem cells, either through bone marrow harvesting or blood draws. Once collected, these stem cells are stored, and sometimes multiplied, in sterile laboratory conditions.

Then comes the dramatic part – the patient’s immune system is ablated (a polite way of saying destroyed) over the course of several days using powerful chemotherapy agents. Depending on the clinic treating the patient, a variety of drugs or combination of drugs is used, some more intense than others. The goal of this “conditioning regimen” is to leave the subject with no functioning immune system, obviously a very vulnerable state during which the patient must be kept in isolation to prevent exposure to any possible contaminants or infectious agents. While undergoing this conditioning regimen, patients typically suffer many of the common side effects of chemotherapy, including hair loss and nausea.

Once the immune system has been eradicated, the previously harvested stem cells are intravenously infused back into the patient’s body, where over the course of several weeks they rebuild the immune system, effectively giving the patient an entirely new array of immune cells. In theory, this brand-new immune system shouldn’t have the destructive tendencies that led their old immune cells to attack the patient’s own central nervous system tissues, the mechanism that is believed to cause the damage and lesions that give multiple sclerosis its name.

Though this may seem like a sledgehammer approach to treating MS, recent studies have shown HSCT to be astoundingly effective when used on properly selected patients. One recently published study followed 52 Swedish MS patients that were treated with HSCT (click here). At five years, relapse free survival was 87%, MRI event free survival 85%, EDSS score progression free survival 77%, and disease-free survival (no relapses, no new MRI lesions, and no EDSS progression) was 68%. The presence of Gadolinium enhancing lesions prior to HSCT was associated with a significantly higher degree of favorable outcome (79% exhibiting disease-free survival at five years). The study’s authors conclude that that “HSCT is a very effective treatment of inflammatory active MS and can be performed with a high degree of safety at experienced centers.” Other recent studies looking at the efficacy of HSCT have found similar results (click here and here). Outcomes such as these give ample reason to sit up and take notice, despite the admittedly frightening prospect of the use of intense chemotherapy conditioning regimens.

One must keep in mind that despite recent advances in treating MS with a new generation of immunosuppressant drugs, the disease in its most serious forms remains a brutal beast intent on laying waste to many of those it afflicts. Next generation MS drugs such as Tysabri, Gilenya, and Tecfidera are proving to be potent in managing the disease in those patients on whom they are effective, but these drugs must be taken indefinitely and each has their own set of possible serious side effects that give many patients pause. HSCT, on the other hand, is meant to be a one-time treatment, after which properly selected and treated patients are proving to show a remarkable degree of sustained disease-free existence, with some even experiencing a reversal in disability status (click here). While no responsible person is calling HSCT a cure for MS, and undergoing the treatment is no walk in the park (intense chemotherapy is serious business), years of disease-free life without the indefinite use of drugs is the stuff of most MSer’s dreams.

HSCT has been proven to work best on patients with very active inflammatory disease (those “properly selected patients” I keep talking about), meaning patients whose disease is marked by frequent relapses and enhancing lesions on their MRI images. Many if not most RRMS patients fall into this category, but unfortunately far fewer SPMS and PPMS patients fit the bill. Study after study (click here and here) has shown that the most important criteria for identifying patients on whom HSCT has the best chance of success is the presence of enhancing lesions as detected by MRI.

Enhancing lesions are a sign that the immune system is actively causing inflammation within a patient’s central nervous system, while the lack of enhancing lesions signals that the disease is being driven by some other, as yet undiscovered, mechanism. A comprehensive overview of HSCT results on MS patients worldwide conducted by Brazilian researchers came up with the following recommendations for selecting patients who might benefit from HSCT: “… the forms of the disease that might benefit from transplantation are: relapsing remitting, primary or secondary progressive, and the “malignant” form, provided there is evidence of inflammatory activity at the time of transplant indication.” These researchers further suggest that the treatment not be given to patients who have lost the ability to walk, with the exception of those suffering from extremely aggressive MS who have accumulated disability quickly. It’s also very important that patients be relatively healthy aside from their MS, hearty enough to withstand the rigors of a short burst of intense chemotherapy.

Unfortunately, as is illustrated by the above recommendations, many patients suffering from progressive MS are left holding the bag, as many SPMS patients and most PPMS patients don’t exhibit signs of active inflammatory disease (enhancing lesions), and thus likely would not be considered good candidates for HSCT. Eligibility for the treatment cannot be ascertained by disability levels alone, as the majority of PPMS patients never display signs of active inflammation (enhancing lesions) even when first presenting with the disease, when disability levels are in many cases barely detectable.

Throughout the world of MS research there is a growing recognition that early treatment is the key to reducing the impact of multiple sclerosis. In fact, many researchers and clinicians now talk of a window of opportunity before the disease becomes entrenched, when all treatment options have their best chance of success. This is the time when the immune system plays its most active role in the disease, and when enhancing lesions are most likely to be rampant. Because HSCT is not without risk and can be a difficult process to get through, it may be challenging for doctors and patients alike to be convinced that this treatment may be their best chance at diminishing the long-term physical impact of multiple sclerosis before that window of opportunity is missed. In fact, it may be a mindset that sees HSCT as too draconian that proves to be the biggest impediment to the widespread adoption of this therapeutic approach.

Despite the immense potential of HSCT, it’s important to understand at the deepest level that this is still an experimental treatment option. Although there is serious science backing the effectiveness of HSCT, protocols have yet to be completely standardized, best practices are still being ascertained, and large-scale trials are still underway (click here). HSCT has not been approved for the treatment of MS by any national or international regulatory body. Nevertheless, as might be expected, a medical tourism industry is springing up around HSCT, and more and more patients are traveling to different locations around the world to undergo the procedure. Websites and Facebook pages about HSCT are proliferating, with some spreading what at best be termed low-grade information. There is a wealth of anecdotal evidence in the form of legitimate patient testimonials confirming the effectiveness of the treatment (click here), but anecdotal evidence for any alternative treatment is almost always skewed heavily towards the positive (folks with negative experiences with such treatments, especially expensive ones, rarely post about them on the Internet), and more than a few of the Internet “resources” I’ve come across seem to be more marketing tools than reliable sources of actionable facts.

Therefore, it is absolutely essential that any patient considering HSCT educate themselves using the most scientifically legitimate resources available, and then educate themselves some more. One should never put complete trust in any patient driven source of info (this blog included), and special diligence should be taken when reading information supplied by companies and institutions offering, for a price, the treatment itself. Some of the best research papers I’ve read on HSCT can be found at the following links (click here, here, and here).

All of these caveats aside, Hematopoietic Stem Cell Transplantation could very well represent a major shift in the way MS is treated in the not-too-distant future, at least for a substantial subset of patients afflicted with the disease. HSCT is serious business, but so too is multiple sclerosis. Even though studies suggest that HSCT does not put a permanent stop to the disease (click here), the promise of many years of life free from any symptoms is enormously tantalizing, so much so that many patients are proving to be more than willing to take the plunge. One can only hope that as researchers perfect their skills and methodologies HSCT will become ever more safe and effective. While likely not the Holy Grail of a cure, HSCT could represent a significant step forward in treating this very ugly disease, albeit one that apparently and unfortunately has little to offer many of those most disabled by the illness, those stuck in the stranglehold of progressive MS whose disease is absent active inflammation.

The below video is a segment from the Australian version of the TV news magazine 60 Minutes, which traces an Aussie MS patient’s successful HSCT journey to Russia and back. Please note that this is not in any way an endorsement of the Russian clinic offering the treatment. In fact, as I was writing this article, news landed in my email inbox of a patient who died at this Moscow clinic while undergoing HSCT for the treatment of a rare disease called Stiff Person Syndrome (click here). Though the news states that HSCT was not necessarily the direct cause of her death, this should only emphasize the serious nature of this treatment regimen. Again, patient selection is the key ingredient to the success of this treatment. Patients must be physically strong enough to endure the taxing effects of the chemotherapy agents used during HSCT, the toxicity of which varies from treatment center to treatment center. One must guard against letting hope eclipse reason, but I know all too well that desperate times can call for desperate measures…

Sunday, July 13, 2014

Bits and Pieces: Writer's Block Edition (Also: Tecfidera, Crying Jags, the Price of MS Drugs, Underwater Wheelchairs, Asinine Research, and Some Funky Stuff)

(For those who receive Wheelchair Kamikaze via email, this post contains videos that can be viewed on the Wheelchair Kamikaze website – click here. They're really good videos, so I encourage you to check them out.)

I usually start these Bits and Pieces posts with thoughts and/or observations that have been rattling around inside my brain pan for the last several days or weeks, but somehow as I sit down to write this I’m experiencing nary a rattle. Truth be told I've been struggling with some writers block these last few weeks, pretty much for the first time since I started writing this blog over five years ago. I suppose it might only be expected after all of these posts, but geez, writer’s block sucks.

I suppose I could jabber on about how disappointed I am in the Boston Red Sox the season, or how much I’m looking forward to the new season of fantastic zombie TV show The Walking Dead (which doesn’t start until October, ugh), or how bummed I am that I missed seeing the new Godzilla movie in 3-D at the IMAX theater which is one block away from my apartment. Can you believe it? I LOVE Godzilla, and I missed the chance to see the beast from the deep in three dimensions on a screen 30 feet tall! How could I be so stupid?

Now, I don’t expect the new Godzilla movie to be anywhere near as good as the original 1954 Godzilla, and by original I mean the Japanese version, not the Americanized one that intercut scenes of Raymond Burr playing an American reporter in Tokyo during Godzilla’s onslaught into the sublime Japanese film, which is actually very introspective (well, as introspective as a movie about a prehistoric beast eating Tokyo can be), filled with nuanced references to Japan’s national angst about World War II, the horrors of atomic warfare, and the potential dangers of science run amok.

Speaking of Raymond Burr, did you know that he once owned his own private island in Fiji? I knew he was a successful actor who starred in some very popular TV series (Perry Mason, Ironsides) and had a very clandestine private life, but go know he had enough money to buy a private island. I sure would like a private island, although these days I guess a private island wouldn’t be much use to me, given my heat sensitivity issues and the fact that I don’t think sand and my wheelchair would get along very well. God, I hate having MS.

Okay, I guess that’s enough writing about nothing, so I might as well get to my latest collection of MS news items and other bits of info that have caught my attention and/or fancy over the past month or so. Hope you find them interesting, informative, entertaining, and worthwhile…

♦ The oral MS drug Tecfidera has been on the market here in the US for a little bit over a year, and a new study provides encouraging news about Tecfidera’s efficacy, while another furnishes some disconcerting data regarding the drug’s side effects. A paper released just this week demonstrates that Tecfidera is remarkably effective on newly diagnosed RRMS patients who have not previously been on other MS drugs (click here). Patients in the study took the drug either two or three times a day, and researchers found that Tecfidera reduced relapse rates by 56% and 60% in these groups, reduced the risk of relapse by 54% and 57%, reduced the number of new or enlarging lesions by 80% and 81%, and reduced Gadolinium enhancing lesions by 92%, when compared to patients taking a placebo. These numbers place Tecfidera amongst the most effective MS drugs available. No word yet on the effectiveness of the drug on patients who have had the disease for a longer duration, or who have already been on other treatments, but one would imagine that similar rates of effectiveness should be expected.

On the downside, another study looking at Tecfidera’s side effects found that gastrointestinal problems and flushing were reported by large numbers of patients taking the drug (click here). Although more serious side effects (such as opportunistic infections) were not reported, researchers found that gastrointestinal problems were severe enough to force roughly 10%-25 % of Tecfidera patients to stop taking the drug, depending on the MS clinic providing the data. Over 50% of Tecfidera patients required some kind of over-the-counter medications to help combat the initial side effects of taking the drug, although the majority of patients noted that these side effects subsided within three months of starting the drug. Seems that similar percentages of patients (10%-25%) experienced few if any side effects, and physicians are trying to find ways to ameliorate the incidence of side effects in their Tecfidera patients.

So, definitely a mixed bag on the Tecfidera front. Highly effective on the one hand, problematic side effects on the other (although no deadly side effects so far, thank heavens). As with all things MS, it seems it’s never easy…

♦ On one of the Internet MS forums I occasionally visit, a member was worried that they might be “cracking up” because they found themselves laughing or crying – sometimes uncontrollably – at the drop of a hat, and often at inappropriate moments. A little light bulb went off in my head (yes, I have light bulbs in my head, and they’re all of the old-fashioned incandescent variety) and I remembered a little known and talked about MS symptom called the pseudobulbar affect (click here). PBA, as it is called, is a symptom seen across a wide variety of disorders of the central nervous system which makes those afflicted with it highly prone to laughing and/or crying fits, usually completely beyond their control.

As might be expected, pseudobulbar affect can be very disturbing to those MS patients who suffer from it, especially if they don’t know that their out of whack emotions might be a symptom of their disease. A recent study found that about 10% of people with MS suffer from PBA (click here), so it’s more common than might be expected. Here is a little online quiz to check if you might have PBA (click here), thoughtfully provided by the drug company that (surprise!) makes a pill to combat it. Yes, there’s a pill for that! It’s called Nuedexta (click here). Now, this is just a guess, but I bet the pill is obscenely expensive. Hey, I just did a little googling (honestly, I did) and found that Nuedexta costs a mere $600 a month. Yikes! Yes, the price of MS meds forces one to laugh to keep from crying, and that has nothing to do with pseudobulbar affect.

♦ Speaking of the high price of MS drugs, five multiple sclerosis medications landed on a list of the 73 drugs whose prices have increased the most since 2007 (click here). Since that time, the price of Copaxone as increased 157%, Rebif 154%, Avonex 147%, Betaseron 133%, and Tysabri 102%. Given the fact that the first four of these drugs (the CRAB drugs) are the oldest MS “disease modifying therapies” and have been on the market for at least 15 years, one would expect their price to have decreased with time rather than increase. Apparently, though, logic plays no role when it comes to pricing MS drugs (and most other drugs, for that matter), as drug companies try to squeeze as much profit as possible out of their older drugs before patents expire and generic alternatives become available. Can’t say this isn’t a winning strategy for the drug companies, since Copaxone generated $4,000,000,000 (!) in sales last year and was the highest grossing MS drug on the market. Is it any wonder that more progress towards finding a cure hasn’t been made when huge gobs of money are being pocketed by keeping MS patients dependent on drugs that only “modify” the disease and most medical research is funded by the companies pocketing those gobs of money? An old saying about geese and golden eggs springs to mind.

♦ Okay, enough about drugs and drug companies, let’s move on to other vistas. How about some underwater ones? In this video (part of the terrific TED Talks series), artist Sue Austin takes my Wheelchair Kamikaze concept to new heights, or, more correctly, depths. After an extended illness left her disabled, Ms. Austin found the world shrinking, a feeling many of those with MS know all too well. As she eloquently expresses in the below video, before getting her wheelchair and exploring all of the potential it presented, she had internalized the limitations and dependencies that society seems subconsciously to want to impose on the disabled. When she got her powerchair, though, her world and all the possibilities contained within it suddenly burst wide open. The chair allowed her to explore unexpected directions in her visual artwork, and ultimately led her to take this new mode of creative expression under the sea. Yes, Sue Austin scuba dives in her wheelchair, and with style. Incredible, beautiful, and inspirational…

♦ The folks at the Made Strong company (click here) offer T-shirts and other items bearing their “Made Strong” credo, and they donate 10% of their profits to worthy causes (for MS, these monies go to the Race to Erase MS). I’m typically turned off by feel-good slogans and platitudes, especially when they have to do with the disease that has taken a wrecking ball to my life. The phrase “I Have MS but MS Doesn’t Have Me” makes me want to poke my eyeballs out with red-hot knitting needles. But there’s something about “Made Strong” that strikes a chord. There’s very little good I care to say about multiple sclerosis, but I do have to admit that struggling with MS and all the BS that goes along with it has made me a mentally stronger person even as the disease has whacked away at my physical self. I’m no longer the neurotic, anxiety riddled person that I used to be back in my healthy days. Dealing with this illness has led me to me confront some of my darkest fears and even my own mortality, forcing to the surface a mettle I honestly didn’t know I possessed. So, yeah, Made Strong, an MS slogan I can live with.

The Made Strong people have generously offered a 10% discount to Wheelchair Kamikaze readers. Just use the promo code WCK10 when ordering. (Full disclosure: Made Strong sent me a free T-shirt to introduce me to their products. Does this make me guilty of accepting a bribe? Maybe, but I promise that I wouldn’t have given them a word on this blog if I didn’t appreciate the sentiment expressed on their goods. I guess everybody has their price, but I’d hate to think that mine is as cheap as a T-shirt. Note to other product manufacturers: sending me free stuff will NOT guarantee you a place on these pages, but, on the offhand chance you’re interested, I do like cameras, vintage NYC World's Fair memorabilia, and exotic chocolates. Also, I really enjoy giving my wife jewelry, so diamonds 1.5 carats or larger set in white gold or platinum might get you a Wheelchair Kamikaze shout out. Just saying.)

♦ Okay, time for another installment of… asinine research (the crowd roars)! I’ve come across yet another study having to do with MS patients falling down (click here). What is it about multiple sclerosis and falling down that so fascinates researchers around the world? Seems to me that the two go hand-in-hand, MS and falling down, sex and pregnancy, beans and cornbread. This has to be the third or fourth “falling down” study I’ve featured here on WK, and I’ve passed up a few along the way.

Okay, so, this study compiled the results of a bunch of different studies from Australia, Sweden, United Kingdom, and the United States. Wait a minute, that’s three English-speaking countries out of four, and I’m pretty sure a lot of Swedish people speak pretty good English, so this immediately casts doubts on the validity of these results. Dammit, this study is biased against non-English-speaking multiple sclerosis patients who fall down! What, falling down in other languages doesn’t count? Don’t we all say “ow” when we fall down, no matter what our native tongue? If you prick us, do we not bleed? Must we constantly erect artificial barriers that keep us from seeing ourselves as one big family of man, instead giving way to tribalism and divisiveness, even when researching as eternally perplexing a subject as whether or not people with a potentially crippling disease fall down? Oh, the humanity!

Despite its jingoistic tendencies, this falling study does break some new ground (pun intended) as it defines MS patients who fall down as either “fallers” (those who fell only once during a during a three-month span) or “frequent fallers” (those who fell twice or more during the three-month span). My question is, do frequent fallers get some kind of gifts or rewards, like frequent flyers? Do they have exclusive access to luxurious waiting areas in their neurologists’ offices, replete with thickly padded floors and walls, where their every whim will be catered to as they tumble and crash to the ground? I mean, what good is it to qualify as a “frequent faller” if you can’t rack up those frequent faller points? Does accumulating enough frequent faller points allow for some kind of upgrade, like maybe to a neurologist who actually gives a shit? Of course, this study does nothing to address these issues. Stupid researchers.

What this study does reveal is shocking, simply shocking! “Most falls occur indoors (65%) between 6 AM and 6 PM (75%).” Gee, that couldn’t be because most MSers with mobility issues tend to spend a lot of time indoors, and – I’m guessing here, probably need to research this more fully – most falls don’t happen while sleeping, could it? “Primary progressive MS was associated with significantly increased odds of being a faller.” Who would’ve thought, given the fact that the most common first presenting symptom of PPMS is gait disturbances, that this form of the disease would lend itself to going kerplop? “Fall risk peaked at EDSS levels of 4.0 and 6.0…” Hmmm, EDSS 4.0 is defined as “fully ambulatory… despite relatively severe disability” and EDSS 6.0 calls for “intermittent or constant assistance (cane, crutch, or brace) required to walk about 325 feet”, so this study finds that patients whose disease has progressed far enough to produce “relatively severe disability” but not far enough to put them in a wheelchair face the greatest danger of taking a dive. Is Captain Obvious one of the authors of this paper? For their next research project, I suggest the authors study whether or not hitting yourself hard on the head with a hammer can cause a concussion. Hopefully by testing the hypothesis on themselves.

Seriously, though, the issue of PwMS suffering numerous falls is no joking matter, as I’ve known several folks who have really hurt themselves after taking a tumble. Here’s a page (click here) with some common sense tips on things that can be done to help prevent falls whether or not you have MS. And for all my MS friends out there, I think my best advice is to just use your head, and not as landing gear. I know we can all be very obstinate and loath to “give in” to the disease, but a broken hip or gashed forehead is too high a price to pay for pride. If you need help, ask for it. If doing something that used to be easy has become nearly impossible, just don’t do it, at least not without assistance. Easier said than done, I know, but MS can do enough damage without your giving it a helping hand.

♦ In my last “Bits and Pieces” post I concluded with a video by the musical artist Paolo Nutini, one of the musicians who are part of the neo-soul/retro-soul movement, making music that hearkens back to the funky, soulful sounds of the 1960s and 70s. Lots of readers commented on how much they enjoyed the video, and since I’m absolutely addicted to the stuff, I figured I’d make examples of the genre a regular part of these little compilations. So, feast your ears on Mr. Charles Bradley, who pours his guts out on every track he records. Part of the Daptone Records stable of artists, Charles Bradley may be considered a new artist, but he’s no young pup. He recorded his first album at the age of 62 in 2011, backed by the relentlessly funky Manahan Street Band. Mr. Bradley has lived a life filled with hardship and heartache, and his musical emergence is so unlikely that it’s almost impossible to believe. It’s captured in a terrific documentary called “Charles Bradley: Soul of America” (click here), which can be viewed on Amazon Prime streaming video. Throughout a lifetime spent living a hardscrabble existence, at times practically homeless, Bradley picked up gigs as a James Brown impersonator, an influence unmistakable in his recorded output.

So, without further fanfare, here is the righteous, mighteous, and out of sighteous Charles Bradley…