Bits and Pieces: Neurologists' Conference Edition (also: Tysabri,Tecfidera, Marijuana, Mold, Asinine Research, and other goodies)

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It’s time once again for Wheelchair Kamikaze’s semi regular compendium of MS news and notes.

Last week the American Academy of Neurology (AAN) held its annual meeting, this year held in Philadelphia. This weeklong event brings together some of the world’s best minds in neurology, and features presentations on all the latest and greatest research. I found it quite striking that this year’s multiple sclerosis presentations almost all had to do with information gleaned from drug trials, but since practically all mid to late stage medical research is conducted by the big pharmaceutical companies, I guess I shouldn’t be surprised. Most of the fault lies not with the drug companies themselves, but with the system within which they operate, which has handed these companies the reins of medical scientific investigation as governments and academia are increasingly less able to fund research due to the current political and economic climate. As a result, our medical research model is becoming more and more dysfunctional, with many potentially paradigm shifting basic research studies never making it out of the lab. Yippee!

I sometimes think about how strange life must be for neurologists who specialize in the most debilitating diseases of the nervous system, none of which have yet to be sufficiently remedied. Doctors practicing most other areas of medicine can look with satisfaction on the patients they’ve cured, but many neuros can spend their entire careers without ever having rid a patient of disease. I can’t help but imagine a group of specialist neurologists getting together at their annual meeting and quickly summarizing the major clinical advances of the past 12 months. “Let’s see, have we cured Parkinson’s disease?” “Nope…” “Okay, how about Huntington’s disease?” “Nope…” “Multiple sclerosis?” “Nope…” “Alzheimer’s?” “Nope…” “Muscular dystrophy?” “Nope…” “ALS?” “Nope…” “Right then, that sucks.... Anybody else really need a drink?…”

Okay, enough of my mental meanderings, here’s my latest collection of mostly MS related research and news, selected solely on the basis of what I deem to be important and/or interesting. Hey, it’s my blog and in this little corner of the Internet I rule with an iron fist. Actually, given my current state of physical decrepitude I’m not sure I could properly muster an iron fist, so I guess I’ll have to be satisfied ruling with a less than formidable half assed fist. Hey, we’ve gotta play the cards we’re dealt…

♦ First up, a sampling of the MS drug news that came out of the AAN meetings. Tysabri was shown to positively impact walking speed in some patients (click here). While at first glance this sounds impressive and could be an indicator that the drug has a positive impact on disease progression, digging down a little deeper leaves me less than knocked out. Slightly over 12% of patients on Tysabri demonstrated improved walking speeds over the course of two years of treatment, which really isn’t bad, but about 7% of patients treated with a placebo also managed a significant improvement in walking speed, which just goes to show you how variable is the nature of relapsing remitting MS. Tysabri did prove to be about 80% better than placebo in this regard, and since most patients would gladly settle for a state of stasis in their disease, any signs of improvement are a big plus. Researchers did find that this effect was more pronounced in patients with more advanced disability, with walking speed increased by as much as five times when compared to placebo in this patient group, which does make the research more compelling.

A small phase 2 trial of Tysabri on SPMS patients came up with encouraging outcomes (click here). In this study, 24 SPMS patients were treated with Tysabri for 60 months, and levels of osteopontin, a marker for inflammation, were tracked in their cerebrospinal fluid. Several other biomarkers were also tracked, and after 60 weeks of treatment statistically significant decreases in markers for inflammation, axonal damage, and demyelination were recorded. These are impressive findings, especially since there are currently no proven treatments for secondary progressive disease. Of course, these results will have to be replicated in larger trials, but this seems to be an encouraging start.

♦ In Tecfidera news, the oral MS drug was shown to be effective when used on patients with highly active disease, reducing annual relapse rates by 60% and the proportion of patients who relapsed by 63% when compared to placebo (click here). I know that many patients are concerned about Tecfidera’s uncomfortable side effects, and a study looking at gastrointestinal side effects in patients taking the drug found that “GI events were largely transient, occurred most frequently in the first month of therapy and were mostly reported as mild to moderate in severity. By the 10^th week of treatment, less than 10 percent of patients reported GI AEs. The incidence of discontinuation due to GI-related AEs was low (7.3 percent).”

There has been much conjecture as to Tecfidera’s primary method of action (in other words, why it works), and a study out of Germany demonstrates that the drug keeps certain immune system cells out of the central nervous system (click here). It’s already been established that Tecfidera has immunosuppressive properties, and it is suspected that the compound also has anti-inflammatory and antioxidant properties as well. Based on the latter suspected properties, some have speculated that the efficacy of Tecfidera could be replicated using a combination of dietary supplements, but since immunosuppression seems to be the drug’s primary method of attack such an approach likely wouldn’t duplicate the effectiveness of the drug.

♦ Okay, let’s turn away from the world of pharmaceuticals and take a look at some recent research regarding more “natural” approaches at treating MS. Green tea has long been extolled as a powerful antioxidant, and a recent study demonstrated that green tea extract has a positive impact on cognitive function (click here). In this small study, healthy volunteers were given green tea extract and then asked to do memory tasks while undergoing functional MRI imaging. The imaging showed that the extract appeared to improve conductivity between certain areas of the brain, and these areas correlated with improved memory function. Happy to hear it, as I take green tea extract every day…

♦ The human gut is home to a wide variety of bacteria, which are known to help with the process of digestion. Doctors have noted for some time that there seems to be some correlation between the gut and so-called autoimmune diseases, and a recent study bears this out (click here-registration may be required, but it’s free and well worth it). Researchers compared the microorganisms contained in the guts of MS patients with those found in healthy subjects, and discovered that MS patients have higher levels of a bacteria that is known to stimulate the immune system, and lower levels of two other types of microorganisms that excrete anti-inflammatory substances. Fascinating findings, I think, which definitely hint at reasons for an immune system gone haywire. Just goes to show how many different elements come into play in the complicated MS disease puzzle, and how many different approaches might be taken to treat the illness.

♦ Here in the US, more and more states are legalizing medical marijuana and a few are even making it legal to use the stuff for recreational purposes. Ganja has been touted as an effective treatment for MS spasticity and muscle spasms, and a recent review done by the American Academy of Neurology gives such notions the official stamp of approval (click here). The AAN found that the demon weed does indeed reduce spasticity and muscle spasms, and the pain associated with these symptoms.

I’ve recently been plagued by an uptick in spasticity and muscle spasms, and the spasms in particular have been driving me crazy. So, though Mary Jane is still illegal in New York State even for medicinal purposes, based on the above study I decided to imbibe in a little reefer madness. Lo and behold, my spasms took a powder and my spasticity loosened its grip.

Truth be told, even as a teenager I was never much of a stoner, though wild and unsubstantiated rumors have it that I occasionally imbibed in some other illicit substances back in the quixotic days of my wayward youth. Hey, I was a teenager and young adult in the 70s and 80s, which were the “say yes to drugs” era. Anyway, as far as sparking up a little boo goes, based on the above study and my own anecdotal experience I see no reason not to give it a try, but if you do, don’t Bogart that joint, my friend…


BTW, despite what the video says, the song is by the band Fraternity of Man, not Country Joe and the Fish. My guess is the person who made the video was probably all goofed up on muggles when they put it together.

♦ Another recent article I came across touched close to home. Between 1993-1995 I worked in a “sick” building which eventually needed to be decontaminated by experts in hazmat suits. In a despicable attempt to save money, the bastards who comprised my company’s upper management withheld a report that said that our building was rife with all kinds of molds and bacteria. I’ve long suspected that my exposure to these nasties played a role in my developing much of the physical crap I’ve been dealing with over the last 15 years or so, and a recent article by an environmental hygienist might just validate my suspicions (click here). The article claims that toxic mold has been associated with MS and other autoimmune diseases, and a quick search around the Internet yielded a few other pieces making similar connections (click here). Granted, the article that originally caught my attention was written by somebody who profits from diagnosing sick buildings, but it isn’t hard to imagine that being exposed to all kinds of toxic muck for an extended period of time could lead to a wide variety of medical problems. And the kicker is that I hated that freaking job…

♦ The good folks at Healthline.com have put together a page full of infographics illustrating “Multiple Sclerosis by the Numbers: Facts, Statistics, and You” (click here). The page delves into statistics and information related to MS disease prevalence, risk factors, and the frequency of the different types of MS, along with symptoms and treatment options. It’s a great primer for all things MS, and highlights some interesting and beguiling facts about the disease. I think my favorite illustration is this one, which starkly demonstrates just how more prevalent MS is in northern regions than southern, using a map of the United States as an example.

The above Infographic shows that people living in the northern half of the US are just about twice as likely to develop MS as those living in the southern states. The Infographic doesn’t go into some other interesting elements regarding the regional effect on MS, such as the fact that people moving from north to south before the age of 15 take on the lower MS risk factors associated with the southern region, while those moving after the age of 15 retain the North’s higher risk of MS. Riddle me that, Batman…

♦ Okay, it’s time once again for one of my favorite topics (drumroll please), ASININE RESEARCH! Scientists from the University of Kansas heroically decided to tackle the following mindbending question: “Is there an increased risk of hip fracture in multiple sclerosis?” (click here). My God, of all of the mysteries associated with MS, finally – finally – paid researchers have valiantly taken on a question that folks with even the scantest knowledge of the disease could answer in about two seconds. Wait – before I divulge their findings, please take a fraction of a second and see if you can guess the answer to this most vexing of inquiries.

Okay, after spending a few microseconds contemplating whether or not multiple sclerosis – a disease that can weaken limbs and thus make walking a bit, um, treacherous – might lead to an increased risk of hip fractures, did you come up with the startlingly radical answer of “yes”? If so, kudos to you, you are now an official multiple sclerosis researcher. You can pick up your certificate at the nearest sandwich shop.

Indeed, after reviewing over one million (!) hospital records of hip fracture admissions spanning a period of 20 years, our stalwart investigators found that MS patients were over twice as likely to suffer hip fractures than the population at large!!! Shocking, no? I mean, who could have possibly surmised that a disease whose symptoms include muscle weakness, spasticity, paralysis, numbness, and balance issues could ever lead those afflicted with it to fall down and break their hips? I only wish the researchers had been able to quantify just how more likely MS patients were to suffer scraped knees and bruised elbows. Inquiring minds want to know!

While I wait on tenterhooks for those revelations, let me try to save future researchers a whole lot of time and effort by answering some other enigmatic questions: Do people with MS have an increased number of visits to neurologists? Yes! Do bladder frequency/urgency issues lead people with MS to spend a ridiculous amount of time in the bathroom? Wait a second, I'll tell you as soon as I get back from the loo... Do bears shit in the woods, is the Pope Catholic, do some researchers seem to have nothing better to do than waste time and money for no apparent reason other than my amusement? Why, yes, yes, and yes! Now which sandwich shop do I go to to pick up my Nobel Prize?…

♦ I leave you, dear readers, with the following music clip, by the British artist Paolo Nutini. I’ve been listening to a lot of the new “retro” Soul and R&B, the best of which captures the spirit of the great music that was made between the mid-60s and early 70s. Being 50 and an old fart gimp who is almost completely divorced from pop culture, this new music has come as something of a revelation, like mana from heaven. Before running across the song, I was completely unaware of Paolo Nutini, but since the video has almost two million hits I suppose I missed something somewhere along the way. From what I can gather, Mr. Nutini is much better known in the UK than in the US, but then again, he could be a household name among twentysomethings here in the states and I’d never know it. Anyway, I think it’s a great song that definitely has that indefinable element called “soul”. It also includes a spoken word piece that comes from a speech in the 1940 Charlie Chaplin film The Great Dictator, a monologue which is as relevant today as it was 74 years ago. The Chaplin clip is well worth googling if you’ve never seen/heard it. I hope you enjoy the music…