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 19^th 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.