Another Bits and Pieces (Mostly CCSVI Related)

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• Finally, a major US news outlet runs a feature piece on CCSVI. Tuesday's New York Times carries a very balanced article on Dr. Zamboni's theory and the impact it's having on the MS universe, as the lead story of the paper's Health section (click here for article). While giving equal coverage to the pros and cons of the theory, the article profiles a patient who appears to have clearly benefited from having the stenosis in her veins addressed using the liberation procedure. The article does stress that further research needs to be done, and gives voice to both the opponents and proponents of CCSVI. The patient featured needed multiple venoplasties performed because of repeated restenosis, an all too common problem for those undergoing the liberation procedure. This article should open the floodgates of coverage in the US media, which has been almost eerily silent on CCSVI until now. I expect that telephones will be exploding in MS neurologists' offices around the country for the rest of the week...

• The Buffalo Neuroimaging Analysis Center (BNAC) is starting the first official blinded treatment study of the liberation procedure this week (click here for info). These are the same good folks who did the CCSVI imaging study released last February, which found that about 60% of MS patients exhibit the hallmark signs of CCSVI, vs. about 25% of healthy subjects that also showed signs of narrowed veins (click here for info). This treatment trial consists of two phases. The first phase includes 10 patients who will undergo the liberation procedure using balloon angioplasty only, not stents, who will then be followed for 30 days to track the efficacy and safety of the treatment. If all goes according to plan, another 20 patients will then be treated, 10 of those with a "sham" treatment, to serve as a control group. The outcomes of the two groups of 10 patients will be carefully tracked and compared to ascertain the impact of the liberation procedure on patients with early-stage MS. Though this trial is relatively small, let's not forget that a journey of a thousand miles begins with single step...

• Speaking of the BNAC, their program of fundraising CCSVI MStery parties is in full swing, with parties planned and being held around the country. These shindigs are a terrific way of donating to CCSVI research while having a great time doing so. This past Sunday night, a party was held at Seattle restaurant The Pink Door, which raised over $13,000 for the BNAC's CCSVI research. The Wheelchair Kamikaze himself (that would be me) made a virtual appearance at the party via Skype, introducing the BNAC's Director, Dr. Robert Zivadinov (who was also a virtual attendee), to the crowd. I was even accorded the highest honor a man can be bestowed, as Jackie Roberts, the owner of The Pink Door, named a drink after my Internet alter ego. The "Wheelchair Kamikaze" consists of vodka, triple sec, lime juice, and blue curacao. After drinking three or four of those, you're guaranteed to have as much trouble walking as I do... (click here for info on how to hold or attend a CCSVI MStery party-even a virtual one!)

• Just a reminder to sign up for and watch the latest NMSS live webcast, "What's New in MS Research and Treatment", which will be held on Wednesday, June 30, from 1 PM to 2:30 PM ET (click here to sign up for webcast). Topics covered will include the new oral MS drug therapies, nervous system regeneration and repair, and (drumroll please) an international overview of CCSVI research. These webcasts are always filled with lots of good information, and, being live, who knows what kind of shenanigans might ensue. I sure hope one of the neurologists isn't caught lip syncing...

• In keeping with the marijuana theme set by previous "Bits and Pieces" posts, Britain has okayed the use of the world's first cannabis-based medicine, called Sativex (click here for info). The drug comes in the form of a spray, and is taken via a spritz into the mouth of a patient. Sativex has been found to effectively reduce spasticity in MS patients, and has been available in Canada for several years. Don't expect to see it available in the US anytime soon, though, because of our asinine laws which so demonize marijuana that it is prohibited from even being researched for possible medicinal uses. And do you know why we have such idiotic laws? To protect our youth from the depravity of illicit drug use, you say? Wrong. Anti-Marijuana legislation was originally enacted to protect the profits of companies such as DuPont and the Hearst Corp., with a liberal dose of racism thrown in for good measure (click here for info). Thankfully, several states have taken things into their own hands and okayed medical marijuana, but the vast majority of chronically ill US citizens seeking relief with this natural remedy are considered criminals...

• Here's a rare bit of good news for MS patients with progressive disease: a clinical study of a treatment protocol for these notoriously difficult to treat patients shows very encouraging results. In a study published in this month's Journal of Neurology, The International Multiple Sclerosis Research Center of New York reports that a retrospective analysis of progressive MS patients that had undergone a series of eight intrathecal (spinal) injections of methotrexate revealed that 89% of a SPMS patients receiving the treatment had stable or improved disability scores one year following treatment, as did 82% of primary progressive patients treated (click here for more info). The patients were considered for this treatment if they were unresponsive or intolerant of approved FDA therapies. Methotrexate is an immunosuppressive drug that is commonly used to treat rheumatoid arthritis and psoriasis. Full disclosure: the MS specialist conducting this study is Dr. Saud Sadiq, my personal neurologist. I was given intrathecal methotrexate treatments, but saw no benefit. Please keep in mind, though, that mine is an extremely unusual case of MS, so unusual that my diagnosis is open to question. When Dr. Sadiq sees me rolling down the hall of his clinic, he does a heroic job of suppressing the urge to run the other way screaming...

That's it for today, folks. I hope readers are finding these Bits and Pieces posts to be interesting and of value. I'm all about value...

More Bits and Pieces (Including a Chance to Win 100 Grand)

Well, it seems like the past few days have brought a blizzard of interesting MS related items my way, so here's another collection of tidbits, offered up for your interest, education, and enjoyment...

• I've decided to stop my experiment with Ampyra (click here for info on Ampyra). Although the drug did seem to give me a slight increase in strength, it also left me feeling lousy; upset stomach, chills, kind of jittery, just generally blech. I'm quite disappointed, because, as I said, I did feel a slight but noticeable increase in strength, but after consulting with my neuro's office, I decided to call it quits after two weeks. It's been about three days since I last took Ampyra, and all of the negative side effects (which kind of felt like the flu) have resolved. The slight benefit I got from the drug just wasn't worth it. So, that's the news on the legal drug front.

• On the illicit drug front, I finally decided to see what all the hubbub about medical marijuana is about, since I've had a lot of trouble sleeping through the night for the last few months because of spasticity and the pain in my joints caused by Avascular Necrosis (click here for info on Avascular Necrosis). Every night has been a restless saga of falling asleep in one position, and then after an hour or so waking up because of the discomfort and spasticity to painfully change positions, only to do the whole thing all over again in another hour or two. Doesn't make for a well rested Wheelchair Kamikaze. In fact, it makes for an unpleasantly cranky Wheelchair Kamikaze. I've never really enjoyed the marijuana high, even as a teenager, but since I keep reading that Mary Jane can do wonders for spasticity and chronic pain, and might even have neuroprotective properties, I procured some of the demon weed, and have taken one strong hit a few minutes before going to bed for each of the last three nights. Happy to report that I've slept better under the influence of reefer than I have in months. I'm now going to insist that Karen decorate our apartment in blacklight posters and lava lamps, and I'm going to start using the word "groovy" to an annoying degree. Medical marijuana is groovy...

• The groovy NMSS has sponsored a series of groovy MS patient video profiles called "We Keep Moving" (click here for the groovy website), and sent a groovy video crew all over the USA producing groovy short video pieces highlighting the very compelling and groovy stories of 10 different groovy MS patients. The 10 groovy videos were shot over the course of 10 groovy weeks, so this was an intensive and very groovy creative endeavor. The team that produced the videos (groovy Producer Kate Milliken, groovy Photographer Amelia Davis and groovy Director Jason DaSilva) are all groovy MS patients themselves, so in addition to their considerable groovy professional talents, they brought the groovy compassion, groovy empathy, and groovy understanding shared by groovy fellow patients to the project. Definitely recommended groovy viewing.

• Okay, enough with "groovy". All grooviness aside, the above videos are really, really good, and kudos go out to all involved. I strongly recommend that everybody click on the above link and check out the "We Keep Moving" project.

• While we're on the subject of videos, Canadian television network CTV has produced another video news piece on CCSVI, this time profiling a patient who traveled to Poland to undergo the Liberation Procedure (click here for video). Again, highly recommended viewing. I plan on doing a longer essay expressing my thoughts on the current state of CCSVI, which I should be posting here on WK within the next few days. Be on the lookout...

• The latest edition of MS In Focus, put out by the Multiple Sclerosis International Federation, is now available online (click here). I found this issue especially interesting, as it features complementary and alternative medical approaches to the treatment of MS, including acupuncture, LDN, cannabis, and others. All in all, a very good overview of treatments that could be of benefit to MS patients, most of which fall outside of the mainstream medical narrative.

• Wheelchair Kamikaze readers in the Seattle, WA area who want to help the cause of CCSVI research (specifically, the University at Buffalo's Neurological Analysis Center, which is doing a variety of CCSVI related research-click here for BNAC info) and have themselves a grand old time while doing so can attend a fundraiser at The Pink Door, a restaurant owned by MS patient (and WK reader) Jackie di Roberto, who was nice enough to send me a physical invitation. I wish Seattle was closer to New York, because it looks like the fundraiser will be quite the shindig, complete with food, wine, and entertainment that will include trapeze artists, musicians, tarot card readers, and stilt walkers. (Click here for more info)

• About.com's always informative MS channel features an article this week that covers how to go about finding a new MS neurologist if you are unhappy with your current one. A common theme among almost every MS Internet forum I've ever been part of is "I hate my fracking neurologist!", which is truly tragic, since as sufferers of a chronic and thus far incurable disease, we are locked in a long-term relationship with the doctor who manages the care and treatment of our illness. Many patients, it seems, feel trapped in a dysfunctional relationship with their neuro, but feel overwhelmed at the prospect of switching physicians. Written by Julie Stachowiak, who wrote the recently published book "The MS Manifesto", which received the coveted Wheelchair Kamikaze stamp of approval in my last post, this article gives sage and practical advice on breaking up with your current neuro and choosing a new one. (Click here for article)

• Finally, here's the "How to Win $100,000" part. The Multiple Sclerosis Research Center of New York (click here for info on the center) is holding a fundraising raffle, in which 2000 tickets will be sold at $100 a piece. The proceeds of the raffle will be split between the Research Center and the lucky person whose ticket is drawn as the winner. So, everyone who buys a raffle ticket is not only helping the MSRCNY do cutting edge MS research (which includes looking for disease markers, developing novel treatments for MS, and doing pioneering work in neuroregenerative techniques), but is also giving themselves a 1:2000 shot at winning $100,000, which are far better odds than the chances of winning an equal amount in any typical state run lottery. Additionally, for those in the New York City area, the center holds an annual patient symposium, which this year will be held on October 10, and will cover topics including oral medications, CCSVI, myelin regenerative therapy, naturopathic MS treatments, and MS across the lifespan. The cost of attending the symposium is a whopping nothing; it's free. I'm a patient at the International Multiple Sclerosis Management Practice, which is the clinical arm of the Research Center, both of which are run by Dr. Saud Sadiq, a well-known researcher, terrific doctor, and all-around good guy. For more information on both the raffle and the symposium, please contact Pamela Bloom at 646-557-3858.

That's it for now...