Wednesday, July 29, 2015

Moments of Clarity – Repost

(Sorry I've been scarce lately, been fighting a really bad case of the creeping cruds that has kept me in bed the last few weeks. Fever, no appetite, weakness, all on top of the progressive MS stuff. Needless to say, not much fun at all. Just started my second round of antibiotics, so I expect things will get better soon. In the meantime, lest you think I simply vanished into the ether, here's a favorite old Wheelchair Kamikaze post of mine, back from December 2009, when this blog was not yet one year old. Rereading this essay after all these years reminded me that I really need to get back to my meditation routine and Zen Buddhist leanings, as I've let them slip these last few years. Anyway, hope you enjoy, and I'll  post something new just as soon as I'm feeling up to it…)

Receiving a diagnosis of MS or any serious illness is a reality shattering event. There you are, going about the business of day-to-day life often as if on autopilot, when a huge hairy beast steps into your path, grabs you by the ankles, and drags you kicking and screaming into some strange new dimension. Suddenly, the world is a different place, everything that you took for granted now imperiled, your expectations for the future warped beyond recognition. What once may have seemed quite orderly has now fallen victim to chaos, and however composed one might appear on the outside, on the inside pandemonium has gained a foothold.

Even after many years of dealing with chronic illness, the chasm between what was expected and what has been received can be tremendously disorienting. When dealing with a progressively disabling illness like MS, reality is a moving target. It seems that just when you acclimate to your current condition, some new symptom or event crops up to tear apart even that impermanent reality. The human mind craves at least a minimal amount of order, but in the life of a chronically ill patient, disorder often rules the day.

Lately I've been awash in a surplus of muddle and inner tension. The relentless progression of my MS, my dissatisfaction with the results of my cataract surgeries (which I'd had such high hopes for), and a bunch of other nagging health issues have combined to turn the universe into an unfriendly swirl of doubt and confusion. The coming of another holiday season, which starkly marks just how far my disease has progressed compared to holidays past, has also taken its toll. What is this treacherous path that I've been forced to follow? Is there some purpose that can be divined from it? And can this path possibly lead to a destination less ugly than the one I anticipate?

As threatening skies have gathered, I've managed to find some solace by taking shelter in a moment I experienced many years ago, a fleeting instant of understanding, a flash of insight that was gone before I could grasp it, a momentary comprehension that there are indeed patterns and reason and logic that lie just beyond the abilities of our puny, inadequate brains to realize. 

I think I've experienced such a moment only once. 

In late November, 1993, I was driving back from Key West to Miami in the company of my extremely difficult but very attractive girlfriend, after spending a slightly debauched but life-affirming weekend at the southernmost town in the United States. Back then Key West still had the vestigial feel of the Bohemian town of last resort it once was, a feel which I understand is tragically now lost. I drove in the early dusk of one of those perfect tropical winter afternoons, the sky an endless blue, the balmy air tender as a gentle peck on the cheek. The convertible top of my little red sports car was down, its engine singing its satisfying throaty growl, King Pleasure's "Moody's Mood for Love" pouring from the speakers which lay embedded in the car's head rests, cleverly placed there so the music could be heard above the noise of the open road. 

The late afternoon sun infused everything with a glowing pink and gold. The road we followed was on one of the smaller islands that make up the Florida Keys, just a little spit of land less than a half-mile across, the Gulf of Mexico a few hundred yards to my left and the Atlantic Ocean the same distance to my right. The air whipping around us tasted like the ocean, and with one hand on the steering wheel and the other feeling the vibrations of the motor through the stick shift, all of my senses were full. 

I started to say something to the girl, and glanced over at her sitting to my right. Though she wore big dark sunglasses, I knew in an instant she was dozing, her head cocked gently to one side, her long strawberry blonde hair playing with the wind. In the amber warmth of the setting sun, the sight of the girl and the feel of the car and the sound of the music stirred some secret part of my soul. 

I took a breath, and quite suddenly everything stopped. The music and the car and the road around me fell silent, I didn't exhale, I couldn't exhale, the girl and her tousled hair and the automobile and the sky and the world around us frozen for a pregnant instant. In that momentary pause, that crack in time, I flashed upon the unexpected understanding that I might have a chance at figuring it all out, that there could be significance and purpose to the teeming chaos that makes up a life, that the path upon which I tread might actually have some direction. 

And then it was gone, everything set back in motion. King Pleasure sang another note, my heart registered a beat, the girl stirred, and the march of life continued once again, just beyond the reach of comprehension. I exhaled. 

Well, the car was sold about a year later, and the girl and I didn't last half that long. I’ve heard that Key West has since succumbed to the inevitable rot of commercialism and is no longer the wonderfully strange little place I so loved back then. But for one single transcendent moment, all of these elements came together in a way that still keeps me pondering, in a tableau forever imprinted in my minds eye. In times of sadness, or trouble, or remorse, or confusion, I often retreat to that moment and somehow find comfort in the wisp of insight into the wholeness of all things that it provided. 

Zen Buddhists refer to these brief moments of understanding as "kensho". They call a deeper, more lasting enlightenment "satori". Whatever its name, I'm grateful to have experienced my moment as its impact has served me as an anchor through troubled times. Whenever the burden seems too great, the road too twisted, when I start getting lost in abstractions like "fair" and "not fair", I can slip back into that moment, and though I can't re-create the experience, the simple knowledge of it and the sense that there are indeed unseen patterns within all of the seeming randomness grants me at least a few measures of serenity.

I guess some would call it faith...

Here's King Pleasure and Annie Ross, singing the song that accompanied my moment of clarity all those years ago… BTW, the title of the track is "Moody's Mood For Love", just for the record...

Monday, July 6, 2015

Back from the NIH: Unfortunately, Nothing Dramatic to Report

Well, I’m back from my sojourn to the nation’s capital in search of answers regarding my ever progressing and relentlessly stubborn illness. Sorry it’s taken so long to report back, but the trip left me pretty exhausted, and for the last week or so I just haven’t been myself. Oddly, I think I’ve been Ethel Merman, but that’ll have to be a subject for another blog post…

On the evening of June 23, Karen and I packed ourselves into a rented wheelchair accessible van and hoofed it down to Bethesda, Maryland (just outside of Washington DC) for a visit to the National Institutes of Health, where I was examined by members of their neuroimmunology and endocrine teams. I haven’t yet received a final report, but it doesn’t look like any new discoveries or insights were made about my condition. Despite the fact that I try to keep my expectations in check, this time around I thought that maybe, just maybe, some aspect of my disease would raise its ugly little head high enough to be recognized by one of the doctors handling my case. I’ve been feeling particularly cruddy the last several months, so I thought that perhaps some kind of shift might have occurred that would lead to an “aha” moment. Alas, it appears ‘twas not to be…

The NIH is the US government’s primary medical research organization, and is staffed by some of the best minds in the business. As a taxpaying US citizen who also happens to suffer from a chronic illness (and who is also a bit of a medical research wonk) my visits to the NIH are always interesting, if only to see firsthand our tax dollars being put to good use. For those qualifying for the NIH’s many ongoing studies, treatment is absolutely free, and the NIH Clinical Center, located on a sprawling campus packed with research facilities, is top-notch. Though I’m no longer part of an NIH study, once you’re in you’re in, and I’ve been making semi regular visits to Bethesda ever since 2009 in my quixotic quest for answers to my medical conundrum. Hey, I used “quixotic” and “conundrum” in the same sentence! Bonus points!

This time around I saw the MS neuro who is in charge of my case, Dr. Irene Cortese, as well as a member of the NIH’s endocrine staff. I underwent a full neurologic exam, had MRIs done of my brain, spine, and pituitary gland, lots of blood taken, and had few functionality tests thrown in just for good measure. All of this over the course of two and half days, which made for a pretty grueling schedule. Especially since the NIH doesn’t keep to my nocturnal ways, forcing me to acknowledge that yes, there is such a thing as morning. As a matter of fact, on day two of our visit I had to get up at the ungodly hour of 5 AM to be ready for an early morning MRI appointment, and getting up at 5 AM is NOT in my repertoire of favorite activities. As a matter of fact, going to bed at 5 AM is more my style. Maybe the NIH should have tested me for vampirism. Just call me Count Gimpula.

As I mentioned, I have yet to receive a final report, but I do know that my MRI images were once again unchanged, which is no surprise since they haven’t changed at all since I was diagnosed over 12 years ago. Same two lesions as always, one tiny spot in my brain (again termed “insignificant” and perhaps not even related to my illness), and a big juicy one right at the top of my spinal cord, where it connects to the brainstem. Not a great spot for a very invasive lesion, as there’s lots of important stuff going on in that area with little extra real estate available for any rewiring or other physiological workarounds. My neurologic exam confirmed that I have gotten significantly weaker over the last year and that my muscles have noticeably atrophied. Some of this atrophy might be attributed to all the weight I’ve lost, which in turn might be attributed to my endocrine problems. No surprises there, either.

Speaking of my endocrine problems, I was seen by a member of the NIH’s endocrine staff, a young “fellow” (this particular fellow happened to be a woman), who while quite diligent didn’t seem to want to even try to integrate my myriad endocrine dysfunctions with my neurologic problems. This is one of my pet peeves with modern medicine – it’s become so damned specialized that each individual specialist views the patient through their own very narrow lens, making it almost impossible to find someone to put together all the pieces of the puzzle. The situation is kind of like that old parable about three blind men trying to describe an elephant. One feels the trunk and thinks the beast is a very large snake. Another bumps up against the elephant’s leg and declares that he’s dealing with a tree. The third reaches out and touches the animal’s side and says he’s come across a wall. All very reasonable assumptions, but all quite wrong.

And here I am, presenting with a wide assortment of debilitating symptoms that to me scream “weird systemic disease”, but each specialist I see concentrates only on one very specific aspect of whatever it is that ails me. Sure, I suppose it’s possible that my neurologic symptoms are completely divorced from my endocrine symptoms which are completely divorced from some of my other strange findings, but common sense would seem to dictate that there must be some common thread running through all of them. But I guess I’m just the Count Gimpula Elephant Man who every now and finds himself turned into Ethel Merman, so why look any further? Shouldn’t I at least have my own reality show?

My pituitary MRI showed that I do not have a pituitary tumor, which counterintuitively might actually be bad news, since pituitary tumors are almost always benign and very treatable, so if I did have one something could be done about it. I do suffer from something called Empty Sella Syndrome (click here), meaning that the space in my skull that should be taken up by my pituitary gland is largely vacant due to the fact that my pituitary has shrunk or become flattened. Why? Who knows? I’ve never gotten an answer. I’ve known about this condition since around the year 2000, but somehow this further physical weirdness never seems to get fully factored in to my complicated diagnostic mess. Really though, since it's so evident that I'm the Ethel Merman Count Gimpula Elephant Man, why bother?

So, there you have it, a nutshell summary of my trip to the NIH. The actual trip itself was okay, aside from the fact that the hotel in Maryland decided to forget that I’d reserved a handicapped accessible room so I could barely get into the bathroom the first night of our stay (we didn’t arrive until after 1 AM and had to be out and about by midmorning the next day, so the mistake wasn’t calamitous), and getting back was a slow 7 ½ hour crawl through Northeast corridor traffic, which was none too kind to my crumbling hips. Still, nothing ventured, nothing gained, even if it doesn’t look like very much was gained. Who knows, maybe once the NIH doctors convene and go over all of my test results something will have revealed itself and I’ll be pleasantly surprised with the final report, but I’m keeping my expectations to a minimum.

Much thanks to everybody who sent me well wishes and notes of support, all of them greatly appreciated. In return, I give you this very private video of me recovering during the week after my return from my visit to Bethesda, when I still wasn’t quite myself…

Tuesday, June 23, 2015

I’m Off to the National Institutes Of Health…

Just wanted to check in lest anybody think I vaporized or otherwise met with misfortune. I’ll have to keep this relatively short, as I’m scrambling to get ready to go to the National Institutes of Health (NIH) Clinical Center, in Bethesda Maryland. The NIH is the US government’s primary medical research organization, and they maintain a state-of-the-art clinical complex on a sprawling campus just outside of Washington DC.

I’ve been seen by the doctors/researchers at the National Institutes of Health (NIH) three times since 2009, when I was part of an NIH study that sought to identify patients with clinically definite multiple sclerosis so that these patients could be used in future MS trials. The NIH conducted this study because they had found the misdiagnosis rate of MS so high in some of their previous research efforts that the number of wrongly diagnosed patients were skewing the results of those trials. In some cases up to 15% of trial subjects were ultimately found to have diseases other than multiple sclerosis. Yes, this number is alarmingly high, and if you think you might be misdiagnosed I wrote an action-packed Wheelchair Kamikaze essay on the subject a few years ago, which you can read by (clicking here).

Being nothing if not pure of soul and kind of heart, I of course had only the noblest intentions for joining the trial, wanting simply to help further the exalted cause of science. Okay, before you’re overcome with nausea I’ll admit to other, less altruistic motives which might have played just a teensy weensy role in my schlepping the five and half hours from New York City to the wilds of the nation’s capital for a medical workup. I’d long suspected that I had, in fact, been misdiagnosed and I knew that as a subject in a study designed specifically to identify clinically definite MS patients I’d be getting a thorough going over by the world-class neuroimmunology team at the NIH, the prospect of which my obsessive impulses quickly latched onto, like a lonely nebbish wrapped around the finger of a femme fatale. Jeez, what an awful metaphor…

Okay, so maybe I’m not so pure of soul and kind of heart, but a selfish bastard interested in nothing more than me me me! Holy Mother of Moses it feels good to finally come clean! By 2009, just six years after my initial diagnosis, I had already been in a wheelchair for a year and despite undergoing all kinds of treatments both mainstream and alternative I was only getting worse. So, yes, I was desperately seeking answers, dammit, and I was dead set on getting them come hell or high water. There, I said it, and I’m glad I said it! Hey, stop looking at me that way or your face will freeze.

After several days of intense poking, prodding, zapping, and scanning, the assembled big brains at the NIH concluded that indeed I did not fit the diagnostic criteria for any form of multiple sclerosis, though they couldn’t come up with any reasonable alternative diagnosis either. Drats! I floated the idea that I might just have a severe case of the cooties, but the esteemed physicians quickly shot down that notion, too. Double drats! An unsatisfying result, to say the least, though the doctors did state that some weird form of MS certainly couldn’t be ruled out. So, as I’ve written previously, my doctors and I have agreed to go with an unofficial diagnosis of PPMS, which in my case stands for the Peculiar Paralysis of Marc Stecker. And, no, I won’t stop making that joke, because it’s just so damned clever.

Now, six years after our first journey to Bethesda, Karen and I will be packing up a rented wheelchair friendly van on Tuesday for yet another sojourn down I-95 to the NIH. Well, actually, Karen will be doing most of the packing since I'm, you know, a complete freaking gimp. I will, though, be driving my wheelchair with reckless abandon around the van as she packs it, in an attempt to keep away the roving hoards of New York City's notorious ne'er-do-wells, these days composed primarily of Wall Street bankers looking to suck every last dime from an almost extinct middle-class…
As I recently detailed in “Attacked by a Three-Headed Beast” (click here) my disease has been giving me quite the thorough ass whupping for the last five or six months, with my neurologic problems compounded immensely by an endocrine system gone berserk and a degenerative bone condition that delights in making my hips and shoulders feel like they are made out of red hot razor blades and shards of glass. Last month I contacted the good doctors at the NIH and told them of the situation, and they invited me to come down for another good going over. This time around I’ll be seeing not only the neuroimmunology team but also their endocrine doctors, and I’ll be getting an extensive series of MRIs and whatever other medical tests are deemed necessary. We’re scheduled to return to NYC Friday evening.

I’m hoping that now with all of the elements of my physical decrepitude apparently coming to a head, something will finally show itself that will elicit a flicker of recognition in at least one of the assembled NIH doctors and researchers and we’ll finally start to unravel the mystery of me. My hunch is that my endocrine problems may be playing a much larger role in my physical mess than was previously thought, a possibility that both my top notch New York City neurologist and endocrinologist agree needs to be explored. The general consensus now seems to be that I probably do have some form of progressive MS, but also some widespread systemic dysfunction that is making my body go kablooey.

Yes, in my case kablooey is an official medical term. In all probability my pituitary gland and/or hypothalamus has gone completely kablooey, which has in turn made the rest of my endocrine system absolutely whopperjawed, leading to a mishmash of messeduppedness that has left me feeling like absolute dreck, weak as a batch of watered-down hooch, muscles as wasted as Dean Martin on a bad night, and down about 25 pounds in only the last three or four months. I have lodged an official protest about all of this with the Cosmic Complaint Department, and if I don’t get some satisfaction soon somebody is going to get a severe tongue lashing, the likes of which hasn’t been seen since Groucho Marx made his introduction to Margaret Dumont in “Duck Soup”:

Yes, if my disease doesn’t want to leave in a taxi, it can leave in a huff. If that’s too soon it can leave in a minute and a huff… One way or another, though, it’s gotta go. If it’s one thing I can’t stand it’s a horrendous, crippling illness that overstays its welcome like a houseguest who’s searching the cupboards for more Cheez Whiz while you’re putting on your pajamas. Jeez, what an obvious metaphor…

I’ll report back upon my return from the hallowed halls of the NIH…

Friday, June 5, 2015

Recent Research on HSCT, the Stem Cell Therapy That May Soon Change the MS Treatment Landscape.

(Please note: the following article is quite long. Though it covers a very important topic and I’ve tried to make it as accessible as possible, I’d suggest getting comfy and grabbing a nice beverage before diving in…)

Over the last six months or so, there has been a wave of new and encouraging research published regarding HSCT (Hematopoietic Stem Cell Therapy) for the treatment of multiple sclerosis. HSCT is the type of stem cell therapy in which a patient’s existing immune system is completely eradicated through the use of powerful chemotherapy drugs and is then rebooted via an infusion of their own stem cells. Some of the results reported have been nothing short of astounding, and even previously skeptical neurologists are now being forced to consider HSCT as a potential game changer that may significantly impact the MS treatment landscape sometime in the not-too-distant future.

So that this article doesn’t take on the length of a Russian novel, rather than getting into the detailed specifics of what HSCT is and isn't I’d like to concentrate on the recent HSCT published research and its implications. For a comprehensive overview of HSCT, please read my previous post on the subject by (clicking here). For a rundown on the different types of stem cell therapies currently being trialed in MS, please (click here).

Just a few things before delving into the research. It’s vitally important that patients not confuse HSCT with regenerative stem cell therapy, which attempts to directly repair the central nervous system damage done by MS. HSCT is a completely different approach with a completely different goal. Regenerative stem cell therapy, such as that being trialed at the Tisch Center in New York (click here) generally does not involve any direct manipulation of patients’ immune systems. HSCT, on the other hand, is entirely directed at providing patients with a new immune system after completely wiping out their presumably defective existing set of immune cells. The two treatment approaches couldn’t be any more different; their only similarity is that they both use stem cells in an attempt to combat multiple sclerosis, albeit in very different ways.

There are currently two forms of HSCT being trialed on MS patients, termed the myeloblative and non-myeloblative treatment protocols. The myeloblative protocol uses a combination of very strong chemotherapy drugs to completely ablate (a fancy word for “destroy”) patients’ immune systems as well as their bone marrow (immune system cells are manufactured in the bone marrow). Non-myeloblative HSCT uses a gentler chemotherapy regimen that takes down the immune system but leaves bone marrow intact. There is some debate among researchers as to which treatment protocol is best suited for combating MS, an issue that is still being sorted out.

There’s also the question of which patients are most likely to respond to HSCT. Because HSCT is directed entirely at replacing a patient’s presumably defective immune system with a new one that doesn’t attack the body’s own nervous system cells, the prevailing thinking is that only patients displaying the hallmarks of immune system driven multiple sclerosis would likely respond well to the treatment. With this in mind, most HSCT research and treatment centers restrict the treatment to patients with active inflammatory MS, meaning that eligible patients must have recently experienced multiple MS relapses and/or displayed enhancing lesions on their MRI images (enhancing lesions are indicators of immune activity within the central nervous system). Since this excludes many secondary progressive (SPMS) and most primary progressive (PPMS) patients, who experience increasing disability in the complete absence of relapses or enhancing lesions, these requirements are understandably the source of much consternation among this patient population (myself included), who are currently presented with no effective treatment options. More on this later.

With these issues in mind, let’s take a look at some of the recently published HSCT research and explore the issues they raise…

A study out of Chicago that used the gentler, non-myeloblative form of HSCT on 151 MS patients (123 RRMS, 28 SPMS) resulted in some startling results on the RRMS patients taking part in the trial (click here). Not only did the vast majority of these patients see their disease stop in its tracks, but a large proportion also saw their levels of disability improve. Four years after treatment, 80% of trial subjects remained relapse free, and 87% showed no signs of disease progression. Furthermore, and perhaps even more astounding, there was a decrease in the disability scores in 50% of patients two years after treatment, and in 64% of patients four years after undergoing the treatment protocol without any further follow-up treatment (click here). Given that a reduction in disability scores is almost unheard of when treating MS patients, these are eye-popping results, to say the least, tempered only by the fact that the SPMS patients included in the trial were reported to have shown no benefit.

This trial was headed up by Dr. Richard Burt of Northwestern University, a leading HSCT researcher. I tried to reach out to Dr. Burt via email with several questions before writing this piece, but unfortunately received no reply. A very informative interview with Dr. Burt is available by (clicking here). If anybody out there knows Dr. Burt, please tell him I’m still patiently waiting for his email reply, fully understanding that he’s a very busy man. In the meantime, if Dr. Burt should find himself in New York City and happens to get run over by a speeding wheelchair, I’ll swear on a stack of research papers that I had nothing to do with it.

A smaller, 25 patient study, called HALT-MS, which used a harsher myeloblative chemotherapy regimen on patients with highly active relapsing disease who had failed to see benefit from at least two previous MS drugs reported impressive interim results (click here). Though study subjects are scheduled to be tracked for five years, the results reported were a snapshot of these patients at the three year mark after treatment. After three years, 78.4% of trial subjects were reported to be free of any disability progression, relapses, or new lesions. Digging deeper into the results revealed that 90.9% of subjects were progression free and 86.3% were relapse free after 36 months. Very impressive.

I managed to get hold of the full published paper of this study, which indicated that although the numbers had not yet been fully crunched, it did appear that the effect of the treatment lessened with time, as fewer patients were reported to be free of signs of the disease at the four and five year marks (68.6% and 58.8% respectively). Again, though, these four and five year numbers were very preliminary, as not all patients had reached this duration after treatment.

A friend of mine, Dave Bexfield, who runs the terrific MS website/forum Active MSers (click here) was one of the participants in the HALT-MS trial. Five years ago Dave was getting absolutely slammed by his disease despite having been on a series of MS drugs. He qualified for the HALT-MS trial and received myeloblative HSCT. His tremendously aggressive RRMS was put entirely into remission for several years, but unfortunately, after five years, Dave recently reported that his disease has shown signs of reawakening (click here) and he is now planning on going on one of the newer, more powerful MS drugs. Dave told me that even though his disease has returned, he has no regrets about undergoing HSCT back in 2010. Without the treatment he is sure the disease would have by now left him completely disabled, and HSCT bought him time at a point when it looked like multiple sclerosis would get the better of him. There are highly effective treatment options available today that weren’t available five years ago, and despite the reemergence of some of his MS symptoms, Dave is very grateful to have taken part in the study.

An Italian team did a head-to-head test of the effectiveness of HSCT versus mitoxantrone (also known as Novantrone) on SPMS patients who had enhancing lesions on their MRIs (click here), the presence of which indicated that they still had an active inflammatory component to their disease.

Currently, mitoxantrone is the only approved drug for use on patients suffering from SPMS. It’s a fairly wicked drug, so toxic to the heart that patients can only stay on it for a limited amount of time. Additionally, mitoxantrone has been linked to a dangerous increase in specific forms of leukemia and lymphoma. As a result of this daunting side effect profile, the use of mitoxantrone has largely fallen out of favor with most MS neurologists.

This phase 2 study used an intensive myeloblative form of HSCT on a small group of study subjects (21, 17 of whom completed the study), and the primary endpoint of the study was a reduction in the number of enhancing lesions detected by MRI. Four years after treatment, HSCT resulted in a 79% reduction in new lesions as compared to those treated with mitoxantrone Unfortunately, no difference in disease progression was reported, but the study was not ideally set up to detect changes in disease progression, a metric which has proven to be very difficult to track even in studies specifically designed to detect disability progression. An editorial accompanying the study, which adds commentary to the statistics provided in the study abstract, should be of interest to all readers (click here).

A very small study out of Hamburg, Germany attempted to directly address the difference in effectiveness of HSCT between RRMS patients with enhancing lesions and progressive MS patients not displaying lesion enhancement (click here). This very small 10 patient trial (four progressive MSers, six with RRMS) compared the results between the two groups two and half years after treatment. The researchers found that although five of the six RRMS patients did show benefit from treatment, none of the progressive patients followed suit. It should be noted that the RRMS patients were considerably less disabled at the start of the study than the progressive test subjects (EDSS 4.25 versus EDSS 6.25).

Previous studies have found that approximately 40% of patients with early PPMS display enhancing lesions on their MRIs (click here) and the presence of such lesions early in the disease may be an indicator of a more aggressive disease course. Patients undergoing the transition from RRMS to SPMS frequently continue to have enhancing lesions for some time after their disease has gone mostly progressive. Remember, enhancing lesions are a sign of active inflammation in the central nervous system, an indicator that the immune system is playing a primary role in driving the disease forward. Since HSCT directly attacks the peripheral immune system, it stands to reason that the treatment would be most effective on patients with active immune system involvement. In the later stages of SPMS, and in the majority of cases of PPMS, it appears that some other as yet undiscovered neurodegenerative process is at work, a process which seems impervious to treatments targeting the peripheral immune system. Studies testing some of the latest potent immunosuppressive drugs – which are highly effective in treating RRMS – on progressive patients have repeatedly failed, the latest such study involving the drug Gilenya (click here). For those of us with progressive MS such failures are very discouraging, and it is with great hope that I’ve looked for hard data supporting the notion that HSCT may benefit even hard-core progressive MSers, which leads us to the final study to be discussed…

Lastly, a study out of Moscow, Russia (click here) provided data suggesting that HSCT might be beneficial to progressive patients who don’t have enhancing lesions (as stated earlier, this includes many SPMS patients and the majority of PPMS patients). Unlike most HSCT treatment centers, the center in Moscow accepts patients with all types of MS (RRMS, SPMS, PRMS, and PPMS), regardless of whether or not they have enhancing lesions on their MRIs or have recently experienced relapses.. A total of 99 patients were included in the study, 43 with RRMS and 56 with various forms of progressive MS.

The summary of this study revealed that 49 months after undergoing treatment, 83.3% of RRMS patients and 75.5% of progressive patients exhibited no signs of relapses or disease progression. After eight years, 45% of treated patients exhibited an improvement in mobility scores, while 45% remained stable. These are compelling numbers, to say the least, particularly for someone like me who has never had enhancing lesions but has nevertheless experienced a constant progression of disability. So compelling, in fact, that I asked a physician friend of mine to provide me the full paper (I could have bought it myself for $40 but most doctors can get research papers for free, and, hey, that’s what friends are for) so that I could dig deeper into this apparently promising research.

Upon reading the full paper (sorry, I can’t link to it because of copyright laws) my enthusiasm was tempered a bit. Although the paper states that only 40% of study subjects had exhibited enhancing lesions before undergoing HSCT, it turns out that this statistic was based on a single MRI done soon before the patients underwent therapy. A single MRI can easily miss enhancing lesions, especially if patients had been on disease modifying drugs, which is why most HSCT centers require patients to have exhibited enhancing lesions and/or relapses (which are almost universally accompanied by enhancing lesions) at some point during the full year prior to treatment.

Additionally, the scope of the disease histories of the patients treated in Moscow varied widely and in many cases was severely deficient. The full paper clearly states this, saying that “patients enrolled in the study previously have been treated in different centers, and the information about disease activity prior in the disease course and its treatment was inhomogeneous and in some cases quite scarce.” I found this sentence to be disquieting, as without comprehensive disease and treatment histories it’s almost impossible to accurately assess the disease state of any individual patient suffering from an illness as complicated as multiple sclerosis. In fact, the abstract of the study, which is available to the general public, even warns that because of this dearth of patient info “comparison with the results in the literature should be done with caution.” This line throws up a big red flag, as the ability to compare and replicate results from study to study is among the foundational basics of the scientific method.

Furthermore, despite publishing statistics that appear to indicate the treatment as practiced in Moscow was effective across a wide spectrum of MS patients, the authors state that “the best candidates for transplantation seem to be relatively young patients with active inflammatory lesions of relatively short duration and rapidly progressive disease, but still low disability scores, unresponsive to conventional therapy.” This was among a number of apparently contradictory elements contained in this research that left me with more questions than answers. While these results certainly can’t be discounted entirely, without a comprehensive, detailed data set it’s impossible to properly discern their value and validity when compared to other studies, a point the authors themselves reiterate on several occasions.

Based on this accumulated HSCT research, certain trends seem clear. HSCT treatment definitely seems remarkably effective on patients with active inflammatory relapsing remitting multiple sclerosis, in the majority of cases resulting in complete remission of the disease for five or more years, sometimes accompanied by a reduction in disability as well. This is far more effective than any of the currently approved disease modifying drugs with the possible exception of Lemtrada, whose mechanism of action in many ways mirrors that of HSCT (for more information on Lemtrada, which was recently approved by the FDA and is covered by most insurance companies, please click here and here).

The safety profile of HSCT as now practiced seems quite robust. None of the above studies reported any HSCT related mortalities, although some serious adverse events above and beyond those that would be considered normal for patients undergoing chemotherapy were described (most in the form of opportunistic infections). Clearly, the decision to undergo HSCT should not be taken lightly, as at its heart the treatment involves using strong chemotherapy drugs to completely eradicate a patient’s existing immune system. Multiple sclerosis is serious business, though, and many patients would gladly accept this risk/reward scenario for a chance at complete remission lasting years or even decades.

Despite the fact that there are credible anecdotal reports on various HSCT websites from progressive MS patients who state that they’ve been helped by the treatment, and even though I’ve desperately wanted – for my own selfish reasons – to find research to back up such statements, I’ve yet to come across any hard data to back up these claims. Research has shown that the treatment can be effective on progressive patients showing signs of active inflammatory disease (enhancing lesions), but there is little hard objective evidence to support the notion that HSCT benefits patients experiencing progression in the absence of active inflammation.

Because the rate of disability progression varies widely from patient to patient suffering from progressive MS, and can sometimes temporarily “plateau” or even cease entirely, predicting disease progression can be quite difficult, even for patients themselves. Using myself as an example, my wife likes to chide me that I’ve been telling her that I’ll probably be bedridden in six months for the last five years. In order to properly assess the effectiveness of any treatment for progressive MS using disability scores as markers, studies would need to last much longer than the 2-3 years typical MS trials generally run, which is among the reasons why so few trials on progressive MS have been conducted. Even in the recent, much talked about successful study involving the use of biotin to treat progressive MS patients (click here), it was shown that after one year only 13% of patients taking placebo showed evidence of disease progression (compared to 4% taking biotin). I certainly hope that the patients with nonenhancing progressive MS reporting benefit do turn out to be success stories and that some form of HSCT does demonstrably prove effective on noninflammatory multiple sclerosis, but so far, at least, the data is lacking.

Also lacking is long-term data on the durability of HSCT derived benefits on patients of all stripes. One older study (click here) looked at patients with aggressive multiple sclerosis 15 years after treatment and found that 44% of patients who had exhibited enhancing lesions before treatment and 10% who didn’t remained progression free. It should be noted that the patients included in this study were treated with earlier, much harsher forms of chemotherapy, and one would hope that the refinements made in the technique more recently would increase durability.

Although all of the studies reported on in this article are considered early to mid-stage trials, they do suggest that HSCT is an extremely promising and potentially game changing treatment for multiple sclerosis. Further trials will be necessary before HSCT receives any kind of official approval for the treatment of multiple sclerosis. Although the treatment is being offered to patients in quite a few clinics around the world, the cost is quite high and most insurance companies will not cover the expense. Given the exorbitant cost of multiple sclerosis drugs, though, as more reliable data is released this situation should change. Paying $100,000 for a one-time treatment that keeps the disease at bay for even 5-7 years is far more cost-effective than paying the roughly $50,000-$60,000 per year currently charged for the FDA approved disease modifying drugs, a point that I’m sure will not be lost on the insurance company bean counters. It should be interesting to see how the pharmaceutical companies react to the HSCT threat to their bottom lines.

Those patients currently considering HSCT therapy should limit their choice of treatment centers to those which have extensive experience administering HSCT, as study after study has shown that safety and efficacy increases exponentially with the number of procedures done. This treatment is not to be taken lightly, and cutting corners for cost or convenience could prove quite the egregious mistake.

Given the current quickening pace of HSCT research, I would guess that the treatment could approach widespread acceptance sometime within the next five years, as long as the financial considerations of the pharmaceutical companies don’t get in the way (and that may prove to be a mighty big if). Based on the latest data, once approved HSCT should prove to be the most effective treatment available for patients with very aggressive active inflammatory multiple sclerosis, but will likely be reserved for those patients who have first failed current frontline therapies. As for patients with nonenhancing progressive disease, though objective hard data supporting the use of HSCT is lacking, given the anecdotal evidence I hope and expect expect future research will be done on such patients in an attempt to clarify the matter. The stakes are quite high for these patients, and even if the odds of success seem slight, the potential gains warrant further investigation. With neuroregenerative and neuroprotective compounds now in the research pipeline, and with HSCT offering so much promise, there is much reason for MSers to harbor hope for a brighter future.

Stay strong, my friends…

Geez, what was that I said about this article not becoming as long as a Russian novel? Maybe I should change my name to Tolstoy (many apologies to Tolstoy)…

Wednesday, May 13, 2015

Attacked by a Three-Headed Beast

When I first started writing Wheelchair Kamikaze back in 2009 I had very little idea of what these pages might eventually evolve into, but I did know that I didn’t want the blog to take the form of an illness diary, a simple journal of my MS symptoms and day-to-day experiences with the disease. Instead, I wanted to concentrate more on the emotional and perceptual impact of dealing with a progressive crippling disease, of being forced to slowly watch one’s body being consumed from within while trying not to lose one’s head in the process. I also thought the blog would be a good place to share my growing obsession with digging into MS research and my efforts at making some sense out of all that I found.

Having said that, of late my physical ailments have been giving me a pretty good trouncing and I’ve started to feel as though I should probably fill everyone in on the details of my puzzling illness, especially since my increasingly feeling like crap is definitely impacting my ability to keep up with regular blogging activities, particularly so when it comes to responding to the many heartfelt comments, messages, and emails sent by the readers I value so much. I’ve always striven to be extremely open and honest on these pages, and it seems almost disingenuous for me to not directly address my physical state when feeling like crud is taking up so much of my damned time.

I’ve often referred to my condition as “complicated” or “atypical” without going into too many details or explaining exactly what I mean. So, here’s what’s been going on with me physically, in all its glory. My body seems to be under attack by a three-headed beast, a triple whammy that these days has me wondering just who the hell I’ve pissed off.

First up there’s my neurologic illness, which just keeps whacking away at me, and of which I’ve written about most often on these pages. My preferred name of this slice of my physical mess is “creeping paralysis”, which is actually an archaic moniker for multiple sclerosis and other progressive neurologic diseases from back in the 19th century. Although I present symptomatically very much like a patient with progressive MS, many of the doctors I’ve seen have been hesitant to definitively label me as having multiple sclerosis since almost all of my test results defy the accepted diagnostic criteria for the disease.

Foremost among the odd aspects of my illness is the fact that I’ve only ever had two central nervous system lesions, neither of which have ever shown any signs of active inflammation: a tiny one in my brain and a much larger, more invasive and troublesome monster located at the very top of my cervical spine, at the critical juncture between my spine and brainstem. I’ve been told that this lesion is so invasive that it’s almost like having my head cut off.

These two lesions haven’t changed one bit or been joined by any others in the 12 years since I first exhibited the telltale limp that eventually led to my initial diagnosis, yet my physical condition has gone straight downhill ever since. In fact, this duo of destruction even show up fully formed on a set of MRIs done to get a look at my pituitary gland back in the year 2000, a full three years before I started limping. At the time these images were first made these lesions were completely overlooked, until they were discovered with much surprise by the doctors at the National Institutes Of Health while they were going over every MRI image I’d ever had done as part of a comprehensive effort to determine just what it is that ails me, a goal neither they nor any other physician has ever able to satisfactorily complete. So, I’m left with a diagnosis of “atypical PPMS”, and I’ve come to grips with this by insisting that in my case those initials stand for the “Peculiar Paralysis of Marc Stecker”.

Whatever you want to call it, my neurologic illness has been anything but kind. It’s left my right side almost completely useless, the muscles in my hand, arm, and leg withered and twisted. Most of the time my right hand is curled into an emaciated claw, an appendage that would look more at home on a mummy than on a living human being. My right side is becoming increasingly impacted as well, getting weaker and less able almost by the day. At times it seems I can just about watch the muscles in my left arm and hand melt away, and with them any remaining semblance of normalcy in my life. Throw in most of the other goodies that come with neurologic illness, such as spasticity, numbness, tingling, immense heat intolerance, and bladder and bowel issues, and the toll has been staggering.

But that’s but one tine of a three-pronged assault on my physical well-being. I also have a wide range of endocrine problems, most likely due to a severely dysfunctional pituitary gland. The pituitary is the human body’s master gland, sending out chemical signals that regulate hormone production in all of the other glands that make up the endocrine system. Because my pituitary is on the fritz – likely because of some kind of autoimmune attack – I experience a wide variety of hormonal deficiencies, some of which if left unchecked can be just as debilitating as my neurologic issues. Among other hormonal abnormalities, I suffer from low testosterone, low cortisol, and low thyroid levels. Although I take various supplements and medicines in an attempt to make up for these deficits, my endocrine system is balanced on such a razor’s edge that if anything goes awry my overall symptoms often get magnified tenfold and I’m left in a vortex of physical despair.

Lately it seems that my thyroid levels have gone completely out of whack, leaving me tremendously weak and fatigued, and overall feeling severely unwell. I’ve lost about 25 pounds in the last three or four months, most likely due to endocrine issues and hopefully not because of something more ominous. Endocrine abnormalities can often result in muscle weakness and even muscle wasting, and could account for the fevers that attack me nightly, making it difficult to figure out which symptoms are caused by my neurologic stuff and which might be attributed to my hormonal problems or some as yet undiscovered culprit.

The complicated interplay of my progressing neurologic illness and increasingly abnormal endocrine system makes me an extremely difficult to treat patient, a puzzling jumble that regularly leaves my doctors at a loss, though I give them lots of credit for working hard at trying to figure me out. I often have completely unexpected and sometimes disastrous reactions to medications, and even minor surgical procedures like biopsies or oral surgery can leave me flat on my back for weeks because my hormonal deficiencies leave my body with very little capacity to heal itself. My endocrine issues are insidious, always at work just below the surface, hiding behind and sometimes exacerbating the symptoms caused by my neurologic illness. This forces my physicians to treat me with kid gloves, always aware of the fact that my strange brew of ailments can sometimes turn typically benign treatments into nasty surprises.

The last but definitely not least of my medical challenges is the constant and often excruciating pain inflicted on me by a condition called avascular necrosis, which has attacked my shoulders and hips. Avascular necrosis (AVN, sometimes also referred to as osteonecrosis) is a disorder that causes the bones in afflicted joints to quite literally die, leading them to eventually crumble and break. Although the precise cause of AVN is not understood, the condition is known to be a very rare side effect of steroid use, and it first manifested in me about six months after I had gone through a 10 day course of IV steroids meant to curtail my rampaging neurologic symptoms back in 2006. It’s now thought that I may have been more susceptible to developing AVN because of all of my endocrine issues – the extent of which we weren’t aware of at the time – and the fact that my body was chronically deficient of the natural steroids a healthy endocrine system produces.

These days, roughly 8 years after those ill-fated steroid treatments, I’m left with the equivalent of two broken hips and two broken shoulders, and all of the attendant excruciating pain that goes along with them. I’m pretty good with words, but I’m at a loss to convey just how agonizing this condition can be. On really bad days, which of late have been occurring with increasing frequency, whenever I try to stand or otherwise put weight on my hips the bones beneath my skin can be heard loudly and horrifically popping, cracking, and crunching as they collapse into each other, sounds often accompanied by my own involuntary yelps and howls. My wife Karen often bears witness to these horrific auditory fireworks, and the look of dismay that shows on her face is heartbreaking.

Chronic, intense pain subverts every aspect of life and commands absolute attention, shackling its victims to moments of utter despair. Through the years I’ve learned at times to affect an almost dispassionate demeanor about my neurologic and endocrine problems, temporarily divorcing myself from the situation and taking on the role of observer. The ghastly pain caused by the AVN allows no such contrivances. I now fully understand why they say torture often doesn’t work during interrogations; there are moments in every day when I would readily admit to killing John F. Kennedy if it would just make the pain stop for even just a few moments.

Avascular necrosis is the leading cause of hip replacement in the United States. Unfortunately, due to my neurologic and endocrine issues I’m not a candidate for surgery as I very well might not survive the procedure, and even if I did I wouldn’t be able to do the requisite rehabilitation afterwards. For many years a powerful anti-inflammatory drug called diclofenac helped keep my pain levels tolerable, but over the last several months it has been discovered that the drug was degrading my kidney function so I was ordered to stop taking it. I’ve tried other anti-inflammatory compounds in its place, but most seem be as effective as sugar pills. I’ve been on and off of a variety of powerful painkillers, from oxycodone to Dilaudid to methadone, but even these potent narcotics don’t help all that much and I despise the way they cloud my mind. I see a very sharp and creative pain management doctor, but there’s only so much she can do. The bottom line is I must try to get through my days with two broken hips and two broken shoulders, in addition to my omnipresent and progressive neurologic and endocrine problems.

So, there you have it, my triple whammy, a triumvirate of infirmities any one of which could be absolutely incapacitating in its own right. The fact that I suffer from all three simultaneously and that they form a three-headed beast that magnifies the power of each sometimes leaves me wondering if I might have somehow been hexed, the victim of some ancient curse. I do my best not to indulge in too much self-pity and try to remain as productive as possible, even if lately that hasn’t been very productive at all. At times, though, the reality of the situation crashes through all of my defenses and leaves me shaking my head, wondering just what the hell happened.

Still, each day the sun rises anew, and as long as I’m on this side of the grass I figure I might as well get on with it as best I can. I’ve always vowed that if these things take me down they’ll take me down swinging, but with so many targets to swing at it’s hard to know precisely where to aim. Especially when taking a swing with a weakened, emaciated, and agonized arm doesn’t amount to all that formidable an attack.

I can still spit with the best of them, though, and if that’s going to be the only weapon left to me, then spit I will. Ha!

On a much more uplifting note, the healthcare website has named Wheelchair Kamikaze one of 2015’s best MS blogs. I thank them profusely, and urge readers to click on the badge below and check out some of the other blogs that made the list. Lots of  great stuff being put out by MS bloggers these days , each with their own unique take on life with multiple sclerosis…

multiple sclerosis best blogs badge


Sunday, April 26, 2015

Glimmers of Hope for Progressive MS: Human Stem Cell Trial, Biotin Study Both Show Efficacy

Progressive multiple sclerosis is a particularly horrendous and intractable illness. Unlike the relapsing remitting form of the disease, for which there are currently 12 approved treatment options (however imperfect these may be), there is tragically little available for progressive MS patients (one very flawed treatment option for SPMS and none for PPMS). At the recent American Academy of Neurology meetings, held last week in Washington DC, some rays of hope for progressive MS finally shone through, among them studies done on honest-to-goodness human progressive MS patients – as opposed to those done on mice or in test tubes – that show particular promise.

As I’ve written about extensively (click here ), the Tisch MS Research Center of New York is currently conducting the only FDA approved regenerative human stem cell trial on MS patients in the United States. Yes, this is the very same study that the National Multiple Sclerosis Society has repeatedly refused to fund (click here). Though this phase 1 trial is not yet complete, interim results were released at the AAN meeting, and they look impressive.

The Tisch Center utilizes a unique approach to using stem cells to treat MS, quite unlike the techniques used in previous regenerative stem cell trials or the stem cell treatments being offered by for-profit operations scattered around the world. Employing proprietary methodology developed in the Tisch Center’s research laboratories, raw mesenchymal stem cells – harvested from each patient’s bone marrow – are transformed into stem cells specific to the human nervous system, called neural progenitor cells. The 20 patients enrolled in this early stage trial will each receive three spinal (intrathecal) injections of neural progenitor cells, spaced three months apart. The interim results released last week report on the nine patients who have thus far begun treatment (click here).

Of these nine patients, seven displayed some form of disease improvement. Six of these seven patients suffer from SPMS, and one from PPMS. Based on neurologic exams, five of these seven patients displayed improved motor functions, including better balance, increase muscle strength, and improved ambulation. Six of the patients reported better bladder function. No significant adverse events were reported. Here’s a graphic detailing the Tisch Center stem cell trial results on a patient by patient basis, taken from the poster presented at the AAN meetings. To view the full poster, please (click here).

While exciting, it’s important to keep these results in perspective. We’re looking at a very small patient population taking part in an early phase 1 trial whose primary endpoint is establishing the safety of the treatment. That said, given the intractability of progressive MS, seeing any significant improvement is extremely encouraging, and these early results certainly validate the approach to regenerative stem cell therapy being taken by the Tisch Center.

Alarmingly, though, the Tisch Center is now facing a fund-raising crisis that threatens to impede the phase 2 extension of this study, as well as much of the other groundbreaking MS research currently underway in the Tisch laboratories. In previous posts I’ve expressed my extreme distress at the NMSS’s repeated refusals to fund research being done at the Tisch Center, and due to unforeseen circumstances the Center’s funding shortfall is now being felt quite acutely. The animal research laboratory used by Tisch Center scientists is being closed as a result of the sale of the hospital in which it’s located (only a block away from the Tisch MS Center), leaving the Center with no viable alternative other than constructing their own facility, which will require a massive fund-raising effort.

Since I’d rather this post concentrate on the research itself, I urge all readers to click here for more information regarding this fund-raising crunch, and to spread the word far and wide. While the Tisch Center is actively conducting the only current FDA approved MS stem cell trial on human beings, the NMSS funds preclinical stem cell experiments being done in test tubes and on mice that, even if spectacularly successful, won’t reach MS patients for more than a decade. Just saying…

(Full disclosure: I am a patient at the MS clinic directly associated with the Tisch MS Research Center of New York, and my MS as well as other physical ailments have been totally kicking my ass lately. So, yeah, I might take this crap just a wee bit personally.)

Another much-anticipated study presented at last week’s AAN conference provided yet more hope for progressive MS patients, though perhaps not as much as originally anticipated. The French pharmaceutical company MedDay released the results of a stage III clinical trial involving the use of massive doses of Biotin to treat patients with Primary Progressive Multiple Sclerosis (PPMS) and Secondary Progressive Multiple Sclerosis (SPMS).

Biotin (vitamin B7, also known As Vitamin H or Coenzyme R) has been used in much lower doses as an over-the-counter “nutraceutical” supplement to treat brittle hair and nails, some skin conditions, and neuropathy brought on by type II diabetes, among other applications (click here). Biotin is known to be necessary for cell growth, the production of fatty acids, and the metabolism of fats and amino acids (click here).

A small pilot study researching the use of high doses of Biotin to treat MS was conducted by MedDay starting in 2013. This initial study produced astounding results, with 91.3% of the 23 progressive MS patients involved displaying improvements in their neurologic condition (click here). This small, unblinded, non-placebo-controlled trial created much excitement, leaving patients and researchers awaiting the results of a much larger placebo-controlled phase 3 trial, which was completed in late 2014. The results of this phase 3 trial were presented at the AAN conferences on Friday, April 24, 2015.

In this late stage study, conducted at 19 centers around France, patients were given 300 mg of Biotin per day, which is the equivalent of approximately 10,000 times the maximum daily recommended dosage. The study involved 154 patients, 103 given Biotin and 51 given a placebo. The results of this study (click here), while positive, don’t appear to be nearly as compelling as had been anticipated based on the early pilot study results.

The results of MedDay’s late stage study revealed that after 12 months, 12.3% of the Biotin treated patients displayed a verified improvement in disability scores, as opposed to 0% of the placebo group. Secondarily, 4% of Biotin treated patients displayed disease progression after one year, versus 13% in the placebo group. Very few adverse events, all considered non-serious, were reported. While these numbers pale in comparison with those seen in the initial pilot study, they still represent a breakthrough of sorts in treating advanced progressive MS, which thus far has defied almost all attempts at treatment.

Looked at another way, about 1 in 8 patients treated with Biotin saw their disability scores improve, while 1 in 25 saw their disease progress. Interestingly, only 1 in 8 (I’m using ballpark figures here) untreated patients experienced disease progression. While these aren’t the kind of results many hoped for based on the early Biotin study results (9 in 10 patients experiencing neurologic improvement), they are still better than nothing, which is what mainstream medicine currently offers patients with advanced (non-relapsing) progressive MS.

Given these factors, many patients with progressive MS (myself included) have expressed great interest in giving Biotin a try, especially since the stuff is readily available in over-the-counter form. The highest dose capsules commercially available are 10 mg, meaning that a patient would need to take 30 capsules a day to replicate the doses used in MedDay’s trials, which administered 100 mg of biotin three times a day. There are a few serious problems with this approach, though, above and beyond the huge amount of capsules that would need to be ingested to replicate the doses used in MedDay’s trial.

First, the compound used in the MedDay trial is a highly concentrated and purified pharmaceutical grade form of Biotin called D-Biotin, a stereoisomer of Biotin that is extremely bioavailable (easily absorbed by the body) and contains active enzymes (click here). This type of Biotin is generally not available in over-the-counter capsules. Second, over-the-counter nutraceuticals are completely unregulated, and it’s almost impossible to know the purity of the compounds contained within the capsules or what other ingredients might also be present. One study found that a shocking one third of herbal supplements tested contained not a trace of primary ingredient the listed on the bottle (click here)! Additionally, some Biotin supplements contain calcium, which if taken in greater amounts can cause hypercalcemia, a potentially very serious medical condition (click here).

After consulting with a naturopathic physician, I'm looking into procuring ultra high grade, USP certified (click here) D-Biotin from a reputable wholesaler and having it put into properly dosed capsules through a compounding pharmacy (I'm doing this with my naturopath's help, of course, and will need a prescription in order to get the drug). While this approach is likely to be much more expensive than using over-the-counter product (probably about $300-$400/month), it will offer the best chance at replicating MedDay’s trials, and would certainly eliminate the vast uncertainties involved in consuming huge quantities of over-the-counter nutraceutical supplements.

So, there you have it, two clinical trials targeting progressive MS in very different ways, but coming up with encouraging results to one degree or another. While the Tisch Center stem cell therapy is still in early trials and is at least several years away from moving from the experimental stage to general clinical use, MedDay’s Biotin compound should be ready for FDA approval by the end of this year, and highly motivated patients might try to get a head start on things by taking matters into their own hands. Although the results of MedDay’s late stage phase 3 trial were a bit underwhelming, they do represent an important advance over the status quo, and many progressive MS patients are well past the “any port in a storm” stage.

As mentioned above, though, please take caution if you plan on going the over-the-counter Biotin route. Here’s a video featuring the terrific John Oliver explaining in his usual brilliant and sardonic fashion the pitfalls and perils of placing your trust in the nutritional supplements industry. If you are planning on trying over-the-counter biotin in the quantities required by the MedDay trial, this is an absolute must watch:

Monday, April 13, 2015

A Stranger in Strange Lands

Way back in the summer of 1989, just about a month before my 26th birthday, I unintentionally found myself living in South Florida. An unfortunate confluence of bad decisions on my part, ill will on the part of others, and an ample dose of plain old rotten luck landed me in an environ in which I never intended to land. Without getting into the gory details, suffice it to say that for me Florida was a refuge of last resort, a place I had visited fairly often (I’d long had family living there) but one which I’d never even considered a spot in which I might one day actually reside. In fact, if asked just a few months before if my living in Florida were even a remote possibility, I would have looked at the questioner as if they were totally insane. I knew on a very basic level that the Sunshine State and I would never make for a comfortable fit, but lo and behold, there I was, an accidental Floridian, ill-suited to the place by any number of measures.

Now, there’s nothing inherently wrong with South Florida; some people find the locale a paradise. I’m just not one of those people. Before arriving in Fort Lauderdale I had spent my young adult years living a quirky Bohemian existence, primarily in Boston but also for a short time in my native New York City. I’d never held a full-time job and had inhabited an eccentric and lively subculture of writers, artists and musicians, or at least wannabe writers, artists and musicians, that formed what sociologists refer to as an urban tribe, with its own customs, values and interests that quite often veered significantly from those of the mainstream.

In both Boston and New York such enclaves were woven into the fabric of city life and like-minded spirits abounded. Fort Lauderdale, though, held little in the way of such a community. Either by nature or nurture (or both) I was temperamentally completely at odds with the place. Whereas I’d always deeply appreciated the muted beauty of a cloudy day, Florida exalts in its status as The Sunshine State. Fort Lauderdale is renowned for its beaches; I detest the feeling of sand between my toes. If Florida is Ying, I am Yang. Despite Zen ideals, this particular combination of Ying and Yang did not produce harmony, but instead a feeling inside me of perpetual discord that eventually led to a crisis of spirit.

Despite my ongoing sense of otherness I remained in Florida for about 10 years, a fact I still have difficulty reconciling, particularly to myself. When I arrived in Florida I was pretty much out of options and had hazy plans of staying maybe 6-12 months. And then I suppose life just took over. I halfheartedly stumbled into my first ever full-time job, working as a low-level video producer for a local cable television company, a quirky enough position in which I had lots of fun but made very little money. In spite of my always feeling like a piglet among puppies I eventually managed to fashion an active social life and find friends and lovers, and though I grew extremely close to some of them, many were quite different from the folks I naturally gravitated to up North. This taught me a lesson that remains one of the few net positives that I took away from my time in Florida: to not prejudge people based on externals alone. Given half a chance, people of all stripes can be full of delightful surprises.

After a few years, my oddball job working for the cable company led to a more lucrative and much more structured position in a marketing company, and that to yet another career builder in an even more stifling corporate environment. While this evolution provided financial comfort, it also shoehorned me into a day-to-day lifestyle that only a few years earlier I had adamantly and vociferously forsworn. At times I barely recognized the clean-cut young man knotting a necktie who looked back at me in the mirror, feeling as if I were living a life deep undercover or, worse yet, as a feckless imposter. Beneath the surface my native eccentric impulses still simmered, but somewhere along the line I had allowed myself to become a passionate man living a passionless existence.

Along the road to this begrudging semi assimilation I lost track of who I once was, the essence of “me” that existed still at the core of my being. This created a spiritual and psychological void that led to terrible cognitive dissonance, manifesting as what I can only describe as a desiccation of the soul. As the years wore on I grew increasingly discontented but found myself caught in a self-imposed catch 22, shackled by the responsibilities of the very lifestyle that was causing me such massive dissatisfaction. The mental blinders I developed in a misguided attempt to stay the course served also to keep me from seeing a way out.

During my last few years in Florida I started experiencing a variety of strange physical symptoms that subsequently turned out to be a subtle presage of the physical crisis to come. Finally, after nearly a decade, the breakup of a long-term romantic relationship provided me with some long overdue escape velocity and I made my way back to New York. Despite the tropical beauty of parts of South Florida, my favorite view of the place turned out to be the one in my rearview mirror.

Arriving back in New York felt like pulling on a favorite pair of well broken-in jeans, once thought lost but happily rediscovered. Before long things started to almost magically fall into place; I reconnected with dear old friends, landed a promising high profile job in a very prestigious but funky outpost of a worldwide mega-media company, and, just a little over a year after returning to NYC, met the marvelous woman who I would eventually marry.

Things seemingly couldn’t have gone much better until – after four years back in New York and just weeks before my first wedding anniversary – the nagging physical symptoms that began back in Florida finally became too pronounced to ignore and I was soon diagnosed with progressive multiple sclerosis. Even though I’d had a sense for years that things weren’t quite right physically, nothing could have prepared me for the maelstrom that would soon erupt within and around me as I was forced into the world of creeping paralysis, once again a stranger in a very strange land, limping down a path for which no roadmap existed. My discarded crisis of spirit was now replaced by a crisis of body.

Despite the best efforts of me and my doctors my disease progressed quite rapidly. Less than four years after my diagnosis I was forced to quit work and go on long-term disability. About a year and a half later I found myself in a wheelchair, the right side of my body withering and my left side beginning to weaken. Quite unexpectedly, these developments allowed parts of me that had been buried for decades to take root and blossom. The gaping holes in my life left by the excision of work and social obligations were soon filled by pursuits and passions that had for far too long been subjugated by the realities and responsibilities of adulthood. Further, my attempts to save my own backside by learning as much as possible about my disease and the ongoing research into treating it injected a sense of purpose and glimmer of light into this murky and frightening new world.

Not to say that my getting sick was in any way fortuitous or – gack! – a blessing. But my increasing disabilities served to strip my life bare as I became less and less able to utilize the trappings of the land of the healthy, rendering an ever-increasing list of everyday objects little or no use to me, luxuries and perceived necessities that had served not too long ago as balms providing superficial comfort and satisfaction, particularly during my wayward days lurching through life in South Florida.

Slowly a curtain of artifice began to lift, and looking at the healthy world from the outside in revealed the synthetic nature of the forces driving most people’s lives; the unappeasable wants and desires conjured by insatiable consumerism, the intentional discontent fostered by a social order that thrives on keeping its populace in a perpetual state of simmering dissatisfaction. During my Florida days these machinations led me down a primrose path, but in my increasingly compromised physical state I began to see with startling clarity that the frenzied world of imposed needs and longings that I once inhabited depends on no thing – no object, person, or sense of self – ever being good enough. No wonder antidepressants are being gobbled by the ton.

Paradoxically, the crisis of body that came all too soon on the heels of my Floridian crisis of spirit allowed that spirit to take root and blossom, freed by unfortunate circumstance to flourish in the absence of any preconceived notions of success and failure. Perhaps the most maddening aspect of this creeping paralysis is that it very likely will never allow me to fully utilize the lessons learned, to put into action in that ever receding land of the healthy the bits of wisdom and insight garnered by being forced to endure what I once believed to be unendurable. Has the experience of prolonged debilitating illness left me unsuited for a life back among the healthy? Now there’s a problem I wouldn’t mind facing, to once again be a stranger in that strange land.

As for the world I now occupy, this truly bizarre land of multiple sclerosis, I intend to always be a stranger within. Although so many of my fellow inhabitants are among the most inspiring people I’ve ever come to know, I will not – I cannot – accept citizenship in this nation. If I was haphazardly thrust out of my element by my never intended move to Florida, I’m a willful alien in this place. No MS green card for me, thank you.

And so I find myself a stranger in two strange lands, the worlds of the sick and the healthy. Maybe it was my destiny to always be the stranger, or perhaps I’m just strange. In either case, vive la diffèrence!

Well, just as long as I don’t have to vive it in Florida…

Monday, March 23, 2015

Bits and Pieces: Short-Term Memory Edition (including MS drug news, restless genitals, natural remedies, Oscar Wilde, ancient viruses, and nauseating MS studies)

(For those readers who receive these posts via email, the following contains lots of multimedia eye and ear candy that can’t be accessed via email. I wouldn’t want you to miss out on all of the good stuff, so (click here) to view this post on the Wheelchair Kamikaze website)

Over past year or so, I felt like I was experiencing lapses of memory and that I just wasn't as mentally sharp as I used to be. Although my disease continues to decimate my body, it has pretty much left my mind alone, and I thankfully haven’t previously suffered from any of the cognitive difficulties that plague so many of my fellow MSers. Slowly, though, I started feeling kind of foggy, and began worrying that I was showing signs of CRAFT (Can't Remember A Freaking Thing). After fretting about this for a few months, I brought my concerns to my neuro, who ordered a battery of cognitive tests done to check my mental capacities. I subsequently did an intense four hours of cognitive testing, and received the results last week. Happily, everything checked out okay, and when compared to cognitive testing that I had done back in 2005 the results were practically identical. So, I guess those short-term memory problems were all in my head (pun intended). What a relief!

Over past year or so, I felt like I was experiencing lapses of memory and that I just wasn't as mentally sharp as I used to be. Although my disease continues to decimate my body, it has pretty much left my mind alone, and I thankfully haven’t previously suffered from any of the cognitive difficulties that plague so many of my fellow MSers. Slowly, though, I started feeling kind of foggy, and began worrying that I was showing signs of CRAFT (Can't Remember A Freaking Thing). After fretting about this for a few months, I brought my concerns to my neuro, who ordered a battery of cognitive tests done to check my mental capacities. I subsequently did an intense four hours of cognitive testing, and received the results last week. Happily, everything checked out okay, and when compared to cognitive testing that I had done back in 2005 the results were practically identical. So, I guess those short-term memory problems were all in my head (pun intended). What a relief!

Right then, now that we’ve established that I’m just a sharp as ever, I offer my latest anthology of MS news and info that has caught my attention over the last few months. It’s been quite a while since I’ve done a Bits and Pieces post, so there’s lots and lots of stuff to go over. So much so that I’m leaving out all of the recent research that’s been released regarding HSCT, the extremely promising stem cell therapy that “reboots” the immune system. I’ll do a separate blog post on HSCT in the next few weeks, as it looks like HSCT just might radically change the MS treatment landscape. In the meantime, what follows may be kind of lengthy, but I’ll try to keep it as entertaining as possible and provide you with lots of multimedia distractions. So, let’s have at it…

♦ I first wrote about the iConquerMS program a few months ago (click here), and I’d once again like to urge all MS patients to sign up and take part in actively helping to kick MS's ass (click here). IConquerMS is a patient driven research project designed to use data collected from thousands of patients to compile information about those patients’ disease history, treatment experiences, and family background so that researchers can glean new insights into the wild world of multiple sclerosis.

I like to think of the project like this: if you imagine MS as a huge jigsaw puzzle made up of millions of pieces, and each patient a single piece of that puzzle, it's easy to see that looking at only a few pieces of the puzzle at any one time would give you very little chance of figuring out what picture the puzzle makes when all the pieces are fit together. While it might be impossible to collect every single piece of this immense puzzle, grabbing a significant chunk of them would give you a much better shot at discerning the picture as a whole. Likewise, iConquerMS aims to collect data from at least 20,000 patients to give researchers a chance to glimpse as big a piece of the MS puzzle as possible. Additionally, patients who sign up at the iConquerMS website can take part in member forums where they can submit research ideas and give their opinions on a variety of MS related topics. The project is being facilitated by The Accelerated Cure Project (click here), one of my favorite MS nonprofit research organizations, so you can be confident that all data will be anonymized and the identity of any individual patient will be kept confidential, and that none of the info will be sold or otherwise put to nefarious use. So, please, please, please, pretty please, sign now up to take part in iConquerMS  (click here).

♦ Now, a peek into the always warm and fuzzy world of MS drugs (insert dripping sarcasm here). Although I started out quite critical of the MS Disease Modifying Drugs (DMDs), through many years of interacting with hundreds of MS patients and reading study after study I now understand that these drugs (especially the newer generation drugs, like Tysabri) can at the very least dramatically increase the quality of life of many of the patients who take them. They are far from perfect, and none of the current MS drugs do a lick to cure the damned disease, but I've learned that you have to go where the science leads you. No patient should be satisfied with the MS status quo, which more and more focuses on treatment rather than cure, and all of the newer generation multiple sclerosis drugs carry with them worrisome potential side effects and a whole set of unknowns regarding the effects of long-term treatment, but at this point I don't think there can be any arguing their beneficial impact on many of patients who choose to take them. I personally feel that the effectiveness of these immunosuppressive drugs has led researchers to take their eye off of what should be the real target, finding the ultimate cause of the disease, but that's a subject for a different day. Here then is a mixed bag of some of the newest research info on MS drugs, both good and bad.

It seems that ever since the first MS drugs were introduced back in the mid-1990s there has been an ongoing debate as to whether or not these drugs actually alter the course of the disease, or if they merely mask symptoms while underlying disease progression chugs along unabated. Through the years a multitude of studies have been published supporting both sides of the argument, some saying that the drugs do slow disease progression while others offer completely contradictory evidence. The latest study to look at this issue comes out of Sweden, using a large database of Swedish MS patients who were diagnosed between 2001 in 2005. This study finds that early treatment with disease modifying drugs does indeed slow disease progression (click here). And though the Swedes seem to be among some of the world’s most trustworthy people and – perhaps more importantly – they make some damned good meatballs, I’m sure this won’t be the last word on the subject. It does appear, though, that there is a growing mountain of evidence that supports the notion that early, aggressive treatment may be a vital component in keeping the MS beast at bay, at least for folks with RRMS.

As many patients are keenly aware, Tysabri is among the most effective MS drugs available, but the treatment comes with some troubling potential side effects. Chief among these is PML, a horrendous and often fatal brain infection caused by the JC virus. Although the JC virus is quite common in humans, infecting between 70%-90% of the general population (click here), the immune system typically keeps the virus in check. However, the same immunosuppressive properties that makes Tysabri so effective in combating MS can also allow the JC virus to become active and lead to PML. Since Tysabri became widely available to the public in 2006, neurologists have attempted to reduce the risk of PML by carefully monitoring patients for the presence of JC virus antibodies in their blood, and these efforts have lessened the dangers associated with Tysabri treatment. For patients currently on Tysabri or considering starting the drug, the folks at the Barts and London Medical School in England have come up with a web-based “PML calculator” (click here), which should help patients assess their chances of getting the dreaded disease by simply answering a few questions. I did some quick hypothetical calculations using this web-based gadget, and found that patients who aren't infected with the JC virus have a 1 in 10,000 chance of developing PML. In other words, for these patients, the risk of PML is very, very small, about .01%. On the other end of the spectrum, though, patients who are JC virus positive, who have previously been on immunosuppressive treatments, and who have been taking Tysabri for between two and four years have a 1 in 89 chance of developing PML. Not so good. In addition to the PML calculator, the page also includes information on the effectiveness of Tysabri, and I’d encourage anybody interested to take a look.

Now, some good news about Tysabri. A recently released study shows that in addition to the drug's well documented ability to reduce the most obvious signs and symptoms of MS such as relapses and lesions appearing on MRIs, Tysabri also has a positive impact on some less apparent but very debilitating aspects of MS, such as depression and fatigue (click here). Those of us who suffer from MS fatigue know all too well how crushing a symptom this can be, and in fact for some patients MS fatigue is their most debilitating symptom. Many patients don't realize it, but in addition to the depressing nature of the destructiveness of MS, the disease can cause physical changes in the brain that can trigger depression. So, the fact that Tysabri can improve fatigue and depression in MS patients is no small positive.

Some troubling news about the oral MS drug Gilenya: it was disclosed earlier this month that a patient who had been on the drug for four years developed PML (click here). This is the second case of PML reported in patients taking Gilenya. Like Tysabri, Gilenya is a powerful immunosuppressant, and though its mechanism differs from that of Tysabri, both drugs are effective in treating RRMS in large part by keeping T cells out of the central nervous system. While the incidence of PML in Gilenya patients appears to be quite rare – there are currently about 110,000 patients taking Gilenya – this latest case serves to illustrate the potential dangers of long-term immunosuppression. As previously noted, these newer, more powerful MS drugs have dramatically increased the quality of life for many relapsing remitting patients, however, the potential dangers associated with their long-term use remained largely unknown. Keep in mind, most drug trials last only 2-3 years, and until newer, more effective, and perhaps more benign treatments become available, patients are expected to be on these drugs indefinitely.

In more bad news regarding Gilenya, the much anticipated results of a trial testing the oral MS drug on patients with Primary Progressive Multiple Sclerosis (PPMS) were finally released, and much to the chagrin of those of us who suffer from this especially insidious form of creeping paralysis, the news wasn’t good (click here). Gilenya proved to be no better than placebo in treating primary progressive disease. This was a very disappointing outcome as there are currently no approved therapies for treating PPMS, which afflicts approximately 10% of the MS population. PPMS differs from RRMS in that PPMS patients never experience any relapses or remissions, instead only a steady increase in their ever more disabling symptoms. There are quite a few other differences between these disease types, including the fact that PPMS attacks men and women in equal numbers, while the female to male ratio in RRMS is somewhere along the lines of 3 to 1. Take it from me, PPMS is a grizzly bear, and this was the first drug trial involving PPMS patients in quite a long time. Researchers were initially very optimistic about this trial’s chances at success, but their expectations proved to be misguided, dammit. There are more trials directed at progressive disease now underway, and researchers are increasingly focusing their attentions on the enormous problem of progressive MS, so hopefully there will be better days ahead.

Those patients taking Tecfidera or thinking of starting Tecfidera treatment will be interested in a recently released study that looked at the levels of immunosuppression brought about by the drug (click here). Tecfidera is one of the newest “blockbuster” MS drugs to hit the market, an oral drug that is supposed to have a less daunting side effect profile than some of the other powerful MS disease modifying drugs now available. Although not initially marketed as such, it turns out that Tecfidera is a potent immunosuppressant, and patients on it are well advised to get regular blood tests to make sure their white blood cell counts don’t drop into dangerous territory. This new study sought to understand exactly which immune cells are most affected by the drug, and found that a type of immune cell known by the catchy name CD8(+) T cells are more heavily suppressed by Tecfidera than other lymphocytes (a type of white blood cell). This is significant because CD8(+) cells are heavily involved in fending off viruses, and if they are overly suppressed a patient could be made vulnerable to opportunistic viral infections, such as the infamous JC virus, which can cause PML. No reason to panic if you are on Tecfidera, but definitely reason to insist that your neurologist is diligent in checking your blood counts.

♦ Okay, I’m not going to giggle, I am not going to giggle… Researchers have recently identified a new symptom of neurologic disease related to Restless Leg Syndrome (RLS), a condition dubbed Restless Genital Syndrome or RGS (click here). Also known as Persistent Genital Arousal Syndrome, the condition was recently described in a 65-year-old female patient suffering from Parkinson’s disease. I know that many MSers, myself included, complain of restless leg syndrome. RLS can drive you absolutely batty, making your limbs feel like they have been overwhelmed by the creepy crawlies, urgently insisting that they need to move for no apparent reason whatsoever. I call my version of the syndrome “Restless Everything Syndrome”, as it effects not only my legs but my arms and hands as well. It never even occurred to me that The Mean Wrigglies – my other name for the condition – might cast it's maddening spell on someone's naughty bits. And now I find out about Restless Genital Syndrome. Gadzooks!

Thinking back, it occurs to me that RGS may have been my first ever neurologic symptom, manifesting itself quite suddenly when I was around the age of 12. Yes, I can vividly remember my nether regions becoming plagued by an ever growing restlessness at the start of my adolescence; by the time I was in high school my trouser worm was positively hyperactive, a coiled spring just looking for any chance to go “boing”! Damned impatient precocious baloney pony! And then, as a young adult, my Mr. Winky developed a veritable wiener wanderlust, an almost whimsical need for tallywhacker exploration and ding-a-ling derring-do! Such was my tragic lot, to be tormented in the very bloom of youth by as pernicious a condition as Restless Genital Syndrome! RGS, epidemic amongst teenagers worldwide!

I’m terribly sorry for the above display of rank immaturity, as I can only imagine that RGS is an extremely distressing condition for any individual having to deal with it. My sincerest apologies. My only excuse is that I'm as mature as two-day-old scotch. To make up for my boorish behavior, here’s a gift of music, a rockin’ old stomp blues number about a lady who most definitely did not suffer from RGS, by the little-known but in his day absolutely irrepressible Mr. Wynonie Harris…

♦ Researchers have recently determined that Constance Wilde, the wife of legendary 19th century Irish writer, wit, and bon vivant Oscar Wilde, died of multiple sclerosis (click here). It seems that Constance Wilde suffered from a mysterious malady that none of the doctors of her time could diagnose. She first became ill in 1889, suffering from lameness in her leg that required her to use a walking stick. Over the next several years her disease progressed, and she suffered from bouts of severe pain as well as decreasing mobility. In 1896 she wrote, “I am tired of doctors and no doctors finding out what to do with me”. Sound familiar? In 1898 she underwent surgery, performed by a doctor who was convinced her bladder problems were caused by a tumor, and she died several days later. So, it seems Constance Wilde received medical care in 1896 that is just about on par with that received by a few of the MS patients I know in 2015. Sadly, I'm only being mildly sarcastic here, and I’m sure Oscar would have something quite droll to say about the current state of MS affairs… In honor of Constance Wilde, here are some of her famously sardonic husband's amusing quips:

– "The world is a stage, but the play is badly cast."

– "I like men who have a future and women who have a past."

– "Work is the curse of the drinking classes."

– "Anyone who lives within their means suffers from a lack of imagination.”

♦ A Wheelchair Kamikaze reader recently reached out to me with what I think is a terrific idea. An MS sufferer herself, she wants to start a website on which artists with MS can sell their work, with a percentage of the proceeds going to MS nonprofits. Seems like a terrific concept as I’d love to find a no hassle place to sell my photos, and I know quite a few other MSers with an artistic bent who I’m sure would take advantage of such an outlet if it existed. I you're interested, please take a few minutes to fill out an online survey about the planned website (click here), which will help the website creator as she moves forward with her idea.

♦ Regular readers of this blog probably know that my favorite theory regarding the root cause of MS has to do with ancient viruses called HERVs (Human Endogenous Retroviruses) that have, over the course of millions of years of evolution, become incorporated into human DNA. At points in the distant past these viruses were infectious and perhaps deadly, but through the eons they've been rendered inert. Scientists thought that these bits of ancient viruses were permanently dormant, but over the last decade evidence has emerged suggesting that they can be activated by the presence of other viruses, bacteria, and/or toxins (the primary suspect is Epstein-Barr virus), and once activated can cause our own cells to produce proteins that identify the cells as potential attackers. This would set the immune system into motion, and thus we might have the mechanics behind “autoimmunity”. This is the only rational explanation for autoimmunity I’ve yet come across, and my gut tells me that investigations into these ancient viruses will upend modern medicine. Some researchers now believe that HERVs may be the driving force not only autoimmune diseases, but also many cancers and even some psychiatric illnesses. Let’s not forget, despite the fact that all current MS drugs target the immune system, the aberrant immune response in MS is more a symptom than a cause, a sign that there is some deeper as yet unidentified problem behind all the chaos.

A new study provides yet one more hint that HERVs play a significant role in multiple sclerosis. Scientists decided to see if antibodies to a specific HERV that has been associated with MS were more prevalent in MSers than in healthy people (click here). Sure enough, two of the antibodies that target this ancient virus were found to be elevated in MS patients when compared to healthy controls, indicating that the virus was active in those suffering from MS. Furthermore, antibody levels decreased after treatment with interferon beta (the stuff in Rebif, Avonex, Betaseron, and Plegridy). Might it be that these drugs suppress MS disease activity because of their antiviral properties rather than the supposed immunomodulatory properties that the MS establishment has been touting for the last 20 years? Things that make you go “hmmmmm…”

♦ Two new studies indicate that drinking lots of coffee can protect people from getting multiple sclerosis (click here). A study out of Sweden – yes, those Swedes have been up to a lot of MS research lately – found that people drinking six or more cups of coffee a day were one and a half times less likely to develop MS than people drinking less coffee. Disappointingly, no word on whether the consumption of Swedish meatballs has any impact on the disease. A US study looked at similar data and found that folks who drank four or more cups of coffee were also one and a half times less likely to develop multiple sclerosis. No word on whether coffee consumption impacts people who already have MS. I spoke to my naturopathic doctor about these studies and although many people might jump to the conclusion that caffeine is probably the reason behind coffee's anti-MS properties, she reminded me that Java contains a wide range of biologically active components, so caffeine alone may not be the answer. I’ve always been a tea drinker, so it's no wonder I got this damned disease. I must say, though, that if I drank 6 cups of coffee a day I'd be so wired that not even the quickest researcher would be able to catch and hold me long enough to conduct any kind of medical study on me. That’s a hell of a lot of coffee. Also, if I tried to drink 6 cups of coffee a day with my current MS related bladder issues, I would simply never stop peeing. Literally. Never. Never ever, not for a single second stop peeing. My wheelchair would have to be converted into a commode.

In tribute to the researchers who conducted these studies, who, considering the current pay to play model of medical research were probably employed by Starbuck's, I present you with the following delightful old tune, “Java Jive”, performed by the classic swing era vocal group The Ink Spots…

♦ In more news about potential natural remedies, researchers in Chicago have discovered that the oral ingestion of cinnamon can suppress multiple sclerosis, at least in mice (click here). Cinnamon appeared to fight off the mouse version of MS in animals that didn’t yet have the disease, and helped suppress symptoms in mice that did. Now, I generally don’t report on MS research done on mice because the most common mouse model of MS, called EAE, bears very little resemblance to the human version of the disease. So many substances have been found to cure mice with EAE that I usually don’t even bother reading research reports once I realize the experiment being reported on was done on mice with EAE. If even a tiny fraction of the substances that cure EAE were effective in treating multiple sclerosis, MS would have been wiped out decades ago. Despite these caveats, cinnamon is pretty yummy, so for those who might want to try gulping down some cinnamon on the off chance it might help their disease I'll go ahead and provide the following instructional video, featuring YouTube sensation Glozell Green:

♦ Here are three bits of MS research news that share one thing in common: the yuck factor. Though they’re all different, upon reading these studies my first response was to wrinkle my nose and say “blechh!”

First up, some news out of Australia about a very promising new drug targeted at secondary progressive multiple sclerosis (SPMS) that uses the bacteria found in human acne as one of its ingredients (click here). Go figure, zit juice might someday help vanquish progressive MS. Yuck! Quite honestly, I don’t think there is anything so revolting that I wouldn’t try it if I thought it might help me fight my disease. What’s that? Crawling up the ass of Chris Christie might slow down my disease progression? Get me to New Jersey!

Our second piece of cringe worthy MS news is quite fascinating, really. Researchers in Australia (Aussies again, what’s up with that? They must be in cahoots with the Swedes) noticed that women who are infected with the bacteria that causes stomach ulcers have a reduced risk of developing MS (click here). Specifically, the study found that 14% of women with MS were infected with the bacteria H. pylori, but the same bacteria showed up in 22% of healthy subjects, a wide enough discrepancy to suggest that infection with the bacteria somehow protects against MS. Researchers propose that H. pylori itself may not inhibit the development of multiple sclerosis, but that infection early in life with certain bacteria and even parasites may prime the immune system to fight infectious agents and steer it away from attacking the body’s own cells. This line of thought is often referred to as the “hygiene hypothesis”, which states that the ultra-hygienic nature of life in the developed world may actually be detrimental to long-term health. After all, our immune systems evolved in the presence of all kinds of infections and parasites that are no longer part of life in hygiene obsessed Western cultures. The absence of such nasties may leave the immune system with too much time on its hands, eventually leading it to mount an attack on the body’s own cells. As they say, idle hands to the devil’s work…

In a related piece of nausea inducing MS news that may argue against the hygiene hypothesis, a study demonstrated that drinking parasitic worm eggs appears to be of no use in battling RRMS (click here). In this trial, patients drank a solution containing worm eggs every two weeks for 12 weeks. Though the treatment was well-tolerated (I take this to mean that nobody hurled while drinking their worm eggs), it also proved to be ineffective. Previous studies of this ilk have found that similar treatments have helped patients with Crohn’s disease, so maybe the jury is still out on worm egg cocktails as a treatment for autoimmune disease, so the hygiene hypothesis lives on. Heck, I’ll take parasites over MS any day of the week. In fact, I’ll have my wormtini dry and with olives, thank you… Here’s mud in your eye! Hey, there’s an idea for a MS clinical trial…

♦ As has become my tradition, I’ll end this edition of Bits and Pieces with some red-hot music by an artist tearing it up in the “neo-soul/R&B” genre. Though Nick Waterhouse hardly looks the part of the soul shaking bluester, his music has turned this funky monkey into a Nick Waterhouse junkie. In this video Nick and his band are joined by Daryl Hall and some additional sensational musicians. The saxophone on this track slays me. If this doesn’t shake your booty it's time to shout "code blue" and break out the defibrillators…

RIP George Bokos, two years gone but never forgotten.