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…
Wow. Give me some of that cordyseps stuff. It sounds way better than MS. Sitting in a sunny spot waiting to sprout into mushrooms. The miracles of science. Thanks again Marc!ReplyDelete
I don’t know, the thought of those mushroom sprouting carcasses is bound to revisit me at bedtime…definitely not the way I want to go.ReplyDelete
Very interesting info - thanks for sharing!ReplyDelete
Thanks for the updated info Marc. The links are chalk full of cerebral vitamins. It seems that Dr Terry Wahls take on Mitochondrial functioning has some merit. Are you eating your greens lately?, which by the way does not go down so well when your appetite is enhanced by the stuff that Sativex tries to imitate(poorly I might add). I had a poignant issue to share, but to much Sativex(wink) has interrupted my train of thought. Again thanks for your incomparable input to the MS gang.ReplyDelete
I'd love to put back on the skiis and Join your brother and entourage for some skiing in the great white north.
Loved the video. I think it should be required viewing for anyone contemplating Gilenya. And to think I turned down my dr's offer to turn myelf into a host body for 'shrooms!ReplyDelete
Hey, not all Canadians are doing the weeds laced drugs!! Although I was recently asked if I tried marijuana to help alleviate my pain. I was taken aback as I would not even consider such a thing. Cannot be a teacher, mother and role model doing that. That bug thing was super gross! Not going to try that either. Two weeks to CCSVI in Albany.ReplyDelete
I'll try that first.
Take Care Marc,
Great stuff, Marc--from disgusting parasites to unbearable cuteness. I'm off to check out the reading material...ReplyDelete
Marc, I am new to your blog- really new to this whole blogging world. I loved this!! Thanks for bringing a smile to may face and chuckle to my throat. Now, if you will excuse me I must go and find a nice Canadian drug dealer in Mississippi- wonder what the odds are in finding one?!!ReplyDelete
What makes me wonder is why California, Connecticut, et.al. have either made legal, or are making legal, marijuana for medicinal purposes, yet the FDA won't look at a derivative thereof.ReplyDelete
Makes no sense to me. But there again... FDA.
I thought I read somewhere that Sativex was in a phase 3 trial in the U.S.ReplyDelete
As for the rest of spasticity drugs? No thanks.
Just wanted to let you know how much I look forward to your posts.I have scoured the internet for MS info and always come back to you.Your unbiased level headed writings are the best there is.Thank you very much.Scott from way upstate NY.
Hi there, I was off-line for a week and am happy to catch up with your new post.ReplyDelete
Marc, you are my favorite blogger and I really enjoy your dry wit and dark humor when you are describing our screwed up medical system. LOL and thank you as always for the excellent information.
You do rock! I also love your "dry wit" and yes our medical system IS "dark humor!" Thanks for being a trusted go-to advocate! ~connieReplyDelete
That ant looks just like me during a pseudo-exacerbation. One day we will meet on the slopes, sativex under the tounge, in the nose, and any other viable oraface. Awesome family. you are a lucky man.ReplyDelete
THE ARCHBISHOP OF GREECE