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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...
Thanks (as always) Marc for keeping us up to date! I am especially excited about the NY Times article, which I have posted a link to on the wall of the CCSVI Norway Facebook group.
ReplyDeleteBest, Ann
PS. I may just have to try one of those "Wheelchair Kamikazes" one of these days...
Marc, Have you thought about going to Med School and becoming my Neuro? You'd be much better than those other guys.
ReplyDeleteKicker
Marc - you're right - 3 or 4 of your signature drinks did NOT improve my walking, and provided a lovely headache and hangover the next day... but it was SO worth it. It was fun to see you there on the big screen. Jackie knows how to throw a party!
ReplyDeleteThanks for another Bits and Pieces post.
Ya thanks Marc for another bits and pieces post...always enjoy the the info! from CANADA:)
ReplyDeleteHi Marc
ReplyDeleteGreat post as always. I have a question about what you said regarding your diagnosis. Ive been struggling with symptoms for 10+ yrs with the frequency and intensity of episodes accelerating lately. I was diagnoseed in Nov with RRMS at St Vs after a bout of optic neuritis and started Rebif. It doesnt seem to be helping. I went to Mt Sinai to see what other tx options there were and just got undiagnosed instead. Normally good news but I still feel like ass on a regular basis. Anyway other than venting I'd like to ask you about any treatments you may have tried and what you think about your neurologist. Thanks
Great updates, Marc, always a pleasure to see and read.
ReplyDeleteIt's high time that CCSVI got some serious media attention in the USA, and it is especially heartening to see a widely read and respected source make a proper job it as well. Take that, Washington Post!
The Buffalo clinical trial news took me by surprise. I had no idea it was coming that fast and I'm awfully pleased that they aren't dicking around with it, either. Procedures coming right on the heels of the announcement and results for the first phase in 30 days to lead into the second phase, now we're cooking with a little gas.
The intrathecal injections of methotrexate study is interesting once I get past the bone-deep shuddering. Do they know why the drug works better that way? Are the percentages of those who improved vs those who stayed the same available? Were there any complications of the procedure, during, after or long term?
Methotrexate
ReplyDeleteI'm SP and my neuro put me on the pill form of methotrexate over a year ago. According to the neuro, it has been shown to reduce brain atrophy in SP patients. Side effects include hair loss, possible liver damage and a slight increase in cancer risk. I can personally attest to it's effectivness at relieving some types of arthritis but can't say one way or the other wrt the MS.
Ann-glad you found the post useful, hope the New York Times article stirs things up in Norway. Wish I could join you in a "Wheelchair Kamikaze", but these days alcohol just makes my MS worse. Major bummer.
ReplyDeleteKicker-funny, my neuro said he has to get me out of the wheelchair so that I can get my degree and start practicing medicine. If it gets me out of the chair, I'll have to practice walking first...
Pam-very cool that you were at the party. From what I've heard, it does indeed sound like Jackie knows how to throw party. Wish I could've been there in person...
anonymous-you're welcome. Since these bits and pieces posts seem to be popular, I'll try to make them a regular part of the blog.
Anonymous-I've tried to many treatments to count. If you look in the left column of the blog, you'll see a list of MS information posts. Click on "MS and Me: What a Treatment" to get a full rundown of all the treatments I've tried. I think the world of my neurologist, Dr. Saud Sadiq. He's very aggressive in treating the disease, but is a very compassionate and caring man. He's a unique individual, and definitely worth getting in touch with.
Natalie-glad you liked the post. I think the intrathecal methotrexate works better than the drug taken orally because it's very targeted, and a much smaller amount is needed when injected directly into the spine. The spinal injections didn't bother me at all, although I do know that some people have a real problem dealing with spinal procedures in general. The needle used for the injections is much thinner than that used for a typical spinal tap. I never experienced any complications, and according to Dr. Sadiq, complications are rare and mild when they do occur. I don't think the piece in the Journal of neurology has been published yet, but I'm sure all of the pertinent info will be in there when it comes out.
Anonymous-according to Dr. Sadiq, intrathecal injections of methotrexate are much more effective than the drug taken orally. Since the dose is less, I believe the risks of side effects is also less. The drug stays in the CNS, and doesn't have much systemic effect. Best of luck with your ongoing treatment...
While the article in the Times was encouraging as far as balanced reporting goes, a review of the comments will give you some idea of how far we have to go. The rabid opposition by physicians is astonishing.
ReplyDeleteOne called me 'dim' in response to a comment I left. Boy, he really knows how to hurt a girl. Dim! boo hoo hoo
You would think Zamboni was proposing fairy dust by their reaction. It is scary.
Marc- I'm a NJ girl who wakes up everyday and says 'should I really be living in Florida...I mean really? (loved that remark)'.
ReplyDeleteThis morning I spent 3 hrs. having an MRA/MRV of the brain/juggs. plenty of time to ruminate. I had carefully printed the Haacke Protocol and forwarded to the Radiologist in advance. What an amazing tech I had. She did plenty of research and was determined to get it right. I believe that while the protocol is new, getting it out to the radiologists is key.
Next step is planning my MStery Party. I have a wealth of family and friends who have walked/ridden/volunteered for the MSWalks over the years. They will be thrilled to invest in this cutting edge venture in Buffalo. Thanks for linking us into the MStery idea. Xena, girl warrior.
mini – that is largely irrelevant. You are looking for a reason to dismiss perfectly good evidence. There is no reason to think that Zamboni’s methods are the gold standard – there cannot be a gold standard when CCSVI has not yet been established. His methods may produce false positives. It makes perfect sense to use various methods to assess the question – methods that it is reasonable to expect should find evidence of CCSVI. We have to examine this question from multiple angles.
ReplyDeleteNow we need follow up studies using more or different methods – and compare those methods to Zamboni’s. Eventually the full picture will emerge.
But I get the sense that some people don’t want the full true scientific story – they want to grasp onto preliminary evidence of a controversial concept and them put blinders on to the full messy scientific process.Check this out.. http://www.ccsviclinic.ca/
The CCSVI Liberation Treatment could be the cure but fact remains that the rate of re-occlusion is stuck at 50% and MS patients being treated in the European and Asian countries end up suffering as they did, 3 months ago. While Big Pharmaceutical Corporations and governments in the US and Canada are coming up with new ideas to stop any advancements to the CCSVI theory (Like the superbugs, etc.), millions continue to travel to countries like India and Poland to get this simple procedure and no valuable data is recorded to support the CCSVI theory. Unless we get our position strong enough to support the CCSVI Theory, we will never be able to beat the Pharma Corporations or start the treatment here and many will keep suffering and dying even after having the procedure done. I lost my elder brother last month because of a blood clot in his stent. He got liberated 5 months ago in Poland. We need to prove to the government that this works. Non-profit organizations like the CCSVI Clinic http://www.ccsviclinic.ca/ are tirelessly working to develop safer protocols with teams of world renowned surgeons even though they are feeling the negative pressure from you know who. This Atlanta based Organization has started Clinical Trials for CCSVI and we need to support these groups because they are our only hope to fight for the truth. Without the valuable data that they are collecting offshore, the procedures will not be allowed here, in our own countries.
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