A Bit, a Piece, and Some Photos…

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Sorry about the nearly two-week gap since my last post, but in addition to earthquakes, hurricanes, and my birthday, I've also been dealing with a persistent low-grade fever that seems to be related to the monthly IVIG infusions I've been receiving. My doctors claim that IVIG doesn't cause such long-term fevers, but the fevers do seem to have started when I started IVIG, and have increased in frequency in the five months that I've been on the stuff. As I'm sure most of you know, those of us with damage to our central nervous systems are especially sensitive to increased body temperatures, so these fevers have been draining both mentally and physically.

The real kick in the ass is that IVIG is the first treatment I've been on that has actually shown any benefit, having restored some strength to my extremely weak right side. Frustratingly, it doesn't seem to have stopped the progressing weakness on my left side, which is quite distressing since I use my relatively strong left side to make up for my extremely gimpy right side. Once the left side goes, I'm all out of sides, and thus shit out of luck, since I'm a mere Earthling and don't have the benefit of the additional extremities sported by some of our extraterrestrial friends. Damn, if only I was one of those six armed, six legged bastards from the planet Mu, but then again if I were I'd be forced to exist on a diet made up exclusively of tremendous brussels sprouts, and I absolutely detest brussels sprouts. Karen adores them, though, and it's only due to the magical power of love that our relationship has survived this calamitous obstacle.

Anyway, enough about me. I thought I'd share a couple of interesting MS related news items, and a new batch of photos that I've added to the Wheelchair Kamikaze photo gallery, which can be found on the left side of this blog. It's been a while since I've added any photos, so it's about time. I'll have a bunch more to post sometime soon, so stop needling me, see, stop riding me, or I'll have to reach through the Internet and sock you right on the kisser. Yikes, suddenly I'm writing like a 1930s movie gangster, so before any more such silliness ensues, let's get on with it…

· The first FDA approved stem cell trial involving multiple sclerosis patients is now underway at the Cleveland Clinic in Cleveland, Ohio (click here). The trial is using mesenchymal stem cells, harvested from a patient's own bone marrow, and then infused intravenously back into the patient after the cells have been cultivated and multiplied in a carefully controlled lab environment. Although this is a very small phase 1 trial, at least one of the initial patients is already reporting some improvements. The mesenchymal stem cells (MSC's) are thought to work by both regulating the body's immune response and initiating the repair of damaged nerve tissues, and offer the extremely exciting prospect of not only stopping the disease but also reversing some of the damage it does to the nervous system. Another small trial, conducted by Dr. Neil Scolding in England, reported encouraging results, finding that patients treated with intravenously infused MSC's showed stability and even some improvement in symptoms after one year (click here). Much larger stem cell trials are currently being readied throughout Europe, and are slated to get going later in 2011 (click here). Similar stem cell treatments are being offered in various overseas clinics at extremely high prices, but the outcome reports from patients who have traveled for these treatments have been mixed

· Yet more idiocy involving the use of medical marijuana to treat MS in the United States has once again made the news, this time in New Jersey, where an MS patient has been tried, convicted, and sentenced to five years in prison for growing 17 marijuana plants for his own use (click here). During his trial, the judge determined that the fact that the defendant has MS and was harvesting the plants as a form of medicine not be allowed to be told to the jury. The convicted man is now appealing the case to the State Supreme Court, and had been out on bail, but as of a few days ago is in prison beginning to serve his sentence. The kicker is that New Jersey now has a law allowing medical marijuana to be used for certain conditions, including MS, but it was passed after this man was first arrested. As I've written about previously (click here), the draconian anti-marijuana laws here in the US - enacted in the mid-20th century largely to protect the cotton industry from the growers of hemp - don't even allow for the testing of pharmaceutical products derived from marijuana, such as Sativex, an anti-spasticity spray available throughout Canada and much of Europe. Sheesh…

Okay, now for the photos I know you've all been waiting for with bated breath. These were all taken between within the last 12 months, with a camera mounted on the arm of my wheelchair. Most were shot in either Central Park or Hudson River Park. I hope you like them. Please click on the thumbnails below to view a larger image. I'd love to know if you have any favorites, or even if you happen to despise any of them, so please feel free to leave some comments…

Still More Bits and Pieces

Image via Wikipedia

Here's yet another collection of MS related items and bits of news that I'd like to pass along to all who are interested. If you're not interested, please feign interest, as my feelings are very easily hurt.

For those expecting another of my essays filled with philosophical musings (mumbo-jumbo?) about life with chronic debilitating illness, no fears, more are on the way. I've got several ideas percolating in my brain pan, but they need just a little more seasoning. In other words, I've been too busy obsessing about my upcoming fantasy baseball league to write them down. I'm all in a tizzy because Chase Utley (the second baseman of the Philadelphia Phillies, as if you didn't know) is going to be starting the season on the disabled list. When will the horrors end?

Anyway, on with the show…

• Gilenya, the new oral MS drug recently approved by the FDA and the European drug regulatory agencies, is derived from a fungus called cordyceps that has been used in traditional Chinese medicine for over 5000 years. The spores of the fungus infiltrate the bodies of insects, turning them into zombies that look for sunny places to attach themselves, where they remain motionless while the fungus matures and finally bursts out of their bodies, eventually releasing more spores to continue the cycle in yet more insects.

  You can't make this stuff up, it sounds like the plot of a science-fiction movie…

  Watch this video, it's truly amazing…

• Last week the first annual meeting of the International Society for Neurovascular Disease was held in Bologna, Italy. On hand were many of the notable doctors and scientists researching CCSVI, and many intriguing presentations were given on a wide variety of subjects related to the "vascular theory of MS". Some of the most notable presentations included the results of a study using CT venography to try to detect venous abnormalities in healthy subjects (only 8% exhibited such abnormalities), a preliminary analysis of the effectiveness of CCSVI treatment on MS patients, the role of CNS hypoperfusion (decreased blood flow) in MS pathology, and the before and after results of venoplasty as seen on functional MRI imaging, among many others. (Click here) to see a list of all of the presentations given, along with links to abstracts of those presentations.

  There's enough here to keep CCSVI junkies busy with several hours of fascinating reading, and as there's nothing more important for a self-advocating MS patient than keeping abreast of the latest research news and information, reading through these abstracts is definitely time well spent.

• HSCT, a stem cell treatment in which a patient's immune system is completely destroyed through the use of chemotherapy drugs, and then "rebooted" by transplanting their own bone marrow derived stem cells back into the patient, has been shown to curtail disease progression, at least in some patients, over the course of a recently released 11 year study (click here). Patients with active inflammation fared best, with 44% of them showing no progression after an average of 11 years. Only 10% of patients without active inflammation (enhancing lesions) saw such success.

  On the downside, two patients (of the 35 study) died as a direct result of the immunoablative chemotherapy used in the regimen. However, in the decade plus since this study was started, the chemotherapy regimen used to ablate the immune system has been refined, and recent mortality figures are almost nil.

  In addition to a halt in progression, some of the patients did see their EDSS scores reduced for a time, but eventually regressed. After three, four, and five years the progression free rates of the treated patients were 80%, so it does appear that the effectiveness of the treatment diminishes with time.

  To my mind, these results raise a fair amount of questions, as they would seem to indicate that the underlying cause of MS is not dealt with even when the immune system is completely destroyed and then rebuilt from scratch. Whatever it is that causes MS, whether it be vascular abnormalities, smoldering viral or bacterial infections (such as EBV, chlamydia pneumonia, or HHV-6), environmental toxins, genetics, or, more likely, a combination of all of the above, is still at work, and eventually causes the immune system to go on the attack once again, at least in over half of the patients studied.

  Intriguing results, to say the least.

• Sativex, an anti-spasticity medication derived from the demon weed marijuana, has been approved in six more European countries, in addition to the UK and Spain, which had previously approved the drug (click here). Canada has also approved the use of Sativex (which is a spray used under the tongue) for spasticity, as it has been proven to be quite safe and effective in combating the painful and debilitating condition in MS patients.

  Spasticity results in stiffness of the muscles, and in extreme cases locks muscles frozen in position. The ailment is the result of muscles receiving nerve signals to contract, but not the signals to relax once again. It is a major cause of pain and disability in Multiple Sclerosis patients.

  Here in the United States, where the powers that be are wise and benevolent enough to protect hapless chronically ill patients from the decadent and debauching effects of any medicine that might be derived from the soul sucking marijuana plant, Sativex cannot even be tested, and instead we are left to take anti-spasticity drugs that in many cases leave patients in a state of extreme stupefaction.

  One such drug, Zanaflex, literally makes my eyes cross with exhaustion about 45 minutes after taking it, and if I'm not in bed about 5 minutes after the crossing of the eyes, I slip into a coma like slumber wherever I happen to be seated. I quite literally crashed forehead first into my computer keyboard when I once mistakenly tried to fight the effects of the medication and finish an e-mail I was working on. But at least my soul is intact, unlike all of those European and Canadian Multiple Sclerosis heathens soaking up the Sativex. Sure hope they have Sativex in hell, because that's where those tens of thousands of spasticity free Sativex hop heads are heading…

• Last, but certainly not least, I'd like to thank my brother, his main squeeze, my three-year-old nephew (their son), and my brother's main squeeze's brother and father, for participating in the Marathon de Ski SP (MS Ski Marathon) up in Montréal, Canada, to help raise funds to fight MS. With my unbearably cute nephew leading the charge, "Team Marc Stecker" won the day, completing about 65 runs down the mountain! My unbearably cute nephew even won a medal, which he was quite proud of. He probably would have been prouder if it was a Thomas the Tank Engine toy, but such are the tribulations of growing up. Incredible that my brother and the gang could accomplish such a feat, especially with all that Sativex stealing the souls of people left and right up there in Canada. Here are some pictures of the winning team…