CCSVI

I keep hearing questions about Dr. Zamboni and CCSVI. My kingdom and the horse to anyone who can tell me what CCSVI stands for. Not you, Christopher. MS patients periodically buy into new and unproved ideas for therapies. An open mind is a good thing. Lord knows the status quo sucks. But we need to take a hard look before we leap into the abyss.

Here is what the NMSS writes about the procedure. “Some studies have indicated that CCSVI, a reported abnormality in blood drainage from the brain and spinal cord, may contribute to nervous system damage in MS. This hypothesis was put forth by Dr. Paolo Zamboni from the University of Ferrara in Italy in 2009, and is now being pursued by other investigators as well.” Very useful.

I asked questions about CCSVI some years back and even had an interventional radiologist offer to do the procedure. My research suggested that veins opened by inflating balloons tend to close again, sometimes in short order. Some physicians use stents to keep the blood vessels open. A few patients at Stanford died from the procedure. No, thanks.

I would not go near CCSVI. Others would. Don’t ever tell a Canadian you are opposed to CCSVI. The procedure is covered by their healthcare plan and is popular. I have spoken critically of CCSVI and almost gotten lynched by Canadians in the audience.

Every MS patient can decide for himself or herself. Remember when it was all the rage to have amalgam fillings removed from our teeth? Some dentists cleaned up before they lost their licenses. I hate to see fellow MSniks falling prey to fads. That speaks volumes about the desperation so many of us feel.

I am heartened that Dr. Sadiq’s stem cell clinical trial at the Tisch MS Research Center in New York is moving to a Phase Two trial. That is a better bet as far as I can tell. Slow and steady wins the race. I possess no greater patience than any of you nor any more wisdom. Just make certain the ice is solid before you venture out on it.

 

 

 

46 Responses to CCSVI

  1. Christopher January 20, 2016 at 9:22 pm #

    I’ve seen and read interviews with Dr. Zamboni. And apart from the unfortunate sounding last name (maybe it’s why the Canadians flock to him), he definitely doesn’t seem like a quack. I think he legitimately believes his procedure is beneficial. Unfortunately the evidence just isn’t there, and there’s no way to measure iron in the brain without opening someone’s head for a biopsy, or using a very specialized, and expensive, diagnostic procedure (MFC MRI). He may have fallen prey to thinking cardiovascular medicine could help solve a neuroimmunolgical problem. They are very different systems.

    • Richard M. Cohen January 21, 2016 at 8:48 am #

      I have heard stories of failures, none of successes.

      R.

  2. Jan1 January 21, 2016 at 12:15 am #

    I’m rather convinced in reading what you two wrote that it is likely better that the name of the procedure only makes me think of a TV show, and the doctor’s name like a familiar ice-making machine — and as far as I’d go with that.

    And speaking of ice, I hope that the East Coast escapes the winter nasties predicted for the weekend.

    • Richard M. Cohen January 21, 2016 at 8:49 am #

      Not me. I am an anarchist.

      R.

  3. Andrew January 21, 2016 at 3:41 am #

    I remember reading that Annette Funiicello, in advanced progression with her MS, was hopeful this surgical procedure might help. It was soon after the early publication that chronic cerebrospinal venous insufficiency “may” contribute to MS. (Richard, you can keep your kingdom and your horse–my most beloved horse died 9 years ago and my hunter/jumper days are over.) When I first read about CCSVI, I must admit that I became intrigued wondering if one of my multiple head first flights over a fence–with my horse deciding to let me go first–may have caused this condition, in spite of wearing a riding helmet. When the multiple tributes appeared in 2013, following Annette’s death, it was mentioned that to her disappointment, she saw no benefit from the CCSVI surgery.
    Stem cell research also seems to me to be the best hope for break-through treatment. I am also fascinated that I am seeing frequent pharmaceutical ads on television for a “new, oral medication for multiple sclerosis, Tecfidera.” I don’t think of MS as falling into the mainstream conditions that most tv drug ads target. But if a small percentage of the estimated 350,000 Americans with MS were to get their neurologist to recommend it, at $55,000 per year estimated cost, I suppose it must be worth those prime time tv ad expenditures. Where I get further confused is when one of the cautions about adverse reactions states “a rare, potentially fatal brain infection, PML, could occur.” I know a precursor for progressive multifocal leukoencephalopathy (PML) is carrying the JC virus, and possibly 80% of the population are carriers. I participated in a two-year study, through my neurologist’s office, testing blood to search for the presence of JC virus antibodies in patients with MS. I have it, so no Tysabri, Tecfidera, et al for me.
    I followed, with interest, when the low-dose Naltrexone “data” was a latest craze for how to alleviate our debilitating symptoms. I don’t want to be jaded, but it seems that some of the “hope” themes, Richard brings up for our discussion, are too easy to manipulate with an articulate marketing of a latest trend. My neurologist always tells me that she wants to examine data along with financial motivation of the one promoting it. Thus, she is not on a bandwagon for the Shankman diet, etc. but is supportive of me trying something if it doesn’t seem to pose risk. So she did encourage me to take extra dosing of vitamin D-3 and says she is pleased to hear my reports of my perceived reduction in pain/spasm with acupuncture treatments.
    I was also very happy to read that JK Rowling, whose mother died with MS, donated huge sums to a Scottish research hospital for MS treatment research. Why, indeed, does Scotland have the highest percentage of people with MS and why one particular district of the country has as many a 1 per 100 residents diagnosed with this disease. Someday . . . what can I say, I still hope for new answers and treatments. Dare I even think of “cure?”

    • Jan1 January 21, 2016 at 9:35 pm #

      Andrew, I tried LDN very early on (am at year 11 now), and I couldn’t tolerate even the very lowest titration dose. To be nice to my local neuro, who kindly gave me a script for my last-ever 3-day steroid string last year after being upset for months by a non-paying and lying client during a period when I was especially trying to help out financially that left me with my worst-ever flare — barely able to walk with help (long, sorry), per his request, I took the JCV free test from Biogen and am highly positive — also not a candidate (not that I would try any of that anyway).

      Solu-Medrol 3-day string #1: wow, great energy
      Solu-Medrol 3-day string #2: not a huge change
      Solu-Medrol 3-day string #3: crickets (funny expression, as they do make noise).
      No more of that: just watch the stress and rest (I’m bad at the latter).

      And, newsaholic me has been rather upset lately by the abundance of drug commercials, esp. during the evening news and even on the Hallmark Channel. And Tecfidera, of all things! Your point rather tells all, is what I think. And I should scrap the TV and stick with the WSJ: a great paper, I think.

    • Vikki January 21, 2016 at 9:42 pm #

      Andrew what I find amusing about the Tec commercials is that every person I know who used this drug couldn’t tolerate the even minor side effects let alone the pml risk. But the commercials make MS look like a walk in the park which is so different than the real life day to day living with this disease. Like you, I am JC+, so Lemtrada is my next step.

  4. Ann Lord January 21, 2016 at 7:32 am #

    HI from Canada,
    Not sure where you heard Canadians get CCSVI paid for. Anyone I have heard about, myself included, paid ourselves. Canada has a good health plan but new, unregulated treatments for any “cures” are not covered. (maybe with the exception of regulated trials) I don’t think CCSVI was more “popular” here that in US? Maybe you heard about Cdns coming to the many facilities in US that performed the CCSVI treatment?

    • Richard M. Cohen January 21, 2016 at 8:54 am #

      Probably I am wrong. I thought I read that somewhere.

      R.

  5. Kat January 21, 2016 at 8:37 am #

    I’m one of those desperate and dopey ones that jumped on the CCSVI trend. I tried the procedure twice, one year apart and received no benefit. I’ve also tried Tecfidera and stopped it due to worsening of symptoms. I guess I’m a risk taker. Dr. Zamboni claimed that he had success in treating his wife’s MS with CCSVI. But how could it help her and not others?

    • Richard M. Cohen January 21, 2016 at 8:55 am #

      Good question.

      R.

    • Steve Schone January 22, 2016 at 5:38 pm #

      Richard, have you not heard of Google? 🙂 Chronic Cerebro Spinal Venous Insufficiency. I had it in Feb, 2012 with no real benefit

      • r. cohen January 23, 2016 at 9:20 am #

        That I did not look it up may reveal my pronounces lack of interest.

        R.

  6. Amy Corcoran-Hunt January 21, 2016 at 10:58 am #

    Read about Tisch’s Phase 2. Very happy about that. There are some excellent results coming from another stem cell trial in the UK but not for primary progressive. Are there any primary progressive patients in Tisch’s trial? Happen to know?

    • Amy Corcoran-Hunt January 21, 2016 at 12:23 pm #

      Never mind, answered my own questions. SPMS and PPMS it seems to be. Yay.

  7. zoots January 21, 2016 at 10:59 am #

    CCSVI is still a hot topic in the MS world. My wife (who has a mild case of PPMS) had the procedure done 3 times. The first time it did help quite a bit for about 4 months. The 2nd & 3rd times didn’t do much as far as we could tell. Dr Sal Sclafani in Brooklyn is perhaps the biggest expert on CCSVI treatment in the USA. Dr Zamboni is in the midst of a 3 year long blinded trial (Brave Dreams) that hopes to have results out this summer.
    MSC seems to be far and away the most promising hope for PPMS – however, biotin (MD1003) is currently gearing up to be a viable PPMS treatment in Europe – it has seen some modest success in two trials so far. Also, Dr Coimbra (a Brazillian neuro) and his partners are claiming 90% success in treating MS with mega doses (50,000-100,000 iu)of vitamin D. My wife is currenty taking biotin and 10,000 of D daily, and has seen some improvements.

    • Christopher January 22, 2016 at 5:01 pm #

      First, I want to say to Amy (and anyone else interested), that there’s a few new stem cell biotechs–the official technical name is regenerative medicine–and they are all recruiting for clinical trials right now. A big one near me in La Jolla, California near San Diego. It’s called StemGenex… Google it. They are also listed on ClinicalTrials.org.

      Second, I want to help clear something up I see here, and on other places on the WWW. MS is caused by a genetic predisposition due to mutations on several gene alleles, and is triggered by an environmental factor or factors. More than likely it is something that attacks the nervous system support cells, the glial cells, which sets off a series of events that eventually causes an autoimmune reaction where the innate nervous system immune system, and the rest of the body’s blood-borne immune system (they’re both different) attack the nervous system equally, even though the original trigger is most likely gone from the body by that point. It is very difficult to believe, let alone prove, that something like too much iron in the brain can effect this two hit system of damage. The most likely scenarios, based on available evidence, is a virus or toxin exposure that wears the body down to a point where the immune system (the main one) becomes dysfunctional, and is able to enter the nervous system through weak points in the blood-brain-barrier where it attacks the nervous system cells because they are alien–the innate nervous system immune system is pristine compared to the body’s immune system, and they don’t really know each other–they’ve never met, and they’re really not supposed to. There is a type of MS that is called ‘fulminant MS,’ and it’s horrible. It causes huge lesions that consumes the brain because of a catastrophic breakdown of the BBB and massive malfunction of the brain’s glial cells. It’s like PML on meth. But my whole point is there’s a lot of bad information out there, and a lot of good info too. Just have to be skeptical, and really ramp up those critical thinking skills.

  8. Jack January 21, 2016 at 2:59 pm #

    Desperate times, desperate measures. With my PPMS progressing rapidly, in 2010, I underwent the CCSVI procedure. I had read testimonials on the Internet from people who swore that after CCSVI they were able to leave their wheelchairs and walk without assistance. I don’t know why I didn’t consider the old admonition, “If it sound’s too good to be true, it probably is.”
    The doctor in Brooklyn had outstanding credentials and after meeting with him, I was convinced that this was the cure that the medical/pharmaceutical establishment was trying to keep from us. I am embarrassed at how easily I joined the ranks of conspiracy theorists.
    In the doctor’s waiting room, I met a Canadian woman who had the procedure done twice in Poland and was giving it a third try by this American interventional radiologist. She told me that not only was CCSVI not covered by Canadian health insurance, the procedure itself was banned in Canada. That is why she had to travel out of her country to have it done. She was unable to get out of her wheelchair independently, but swore that she experienced remission after each procedure and was willing to pay the $10,000 fee to do it again.
    To make an already-too-long story short, The CCSVI procedure was painful, required a month-long post-procedure regimen of antibiotic injections and yielded no positive result. The doctor claimed I would have to undergo the process repeatedly because my venal insufficiency was so severe.
    As soon as I finish sending my life savings to the Nigerian prince who emailed me for help in claiming the $10 million he wants to share with me, I will think about another round of CCSVI.

    • Jan1 January 21, 2016 at 9:46 pm #

      Jack, funny last paragraph — does anyone really cave to that stuff? (I recently saw a funny online TED talk about the speaker goading someone asking for the ridiculous. I wouldn’t goad that way, but I admit that it was rather funny).

      And those who, as you had mentioned, wrote on the Internet that they swore that the procedure worked likely are just simply swearing now, perhaps. I don’t think that anyone would fault you for trying — we all make the best decisions we can at the time.

  9. JoanZ January 21, 2016 at 3:54 pm #

    I looked into this, had an MRI and ultrasound, was identified as a candidate, then heard my inner chicken-sh** loud and clear, and did nothing. My gut just told me to leave it alone. I’m ok with that.

  10. Gala January 21, 2016 at 4:17 pm #

    About 2-3 month ago you told that you will write about your marginal improving after treatment at Tisch Institute. Maybe I missed it, but could you explore it a like… Thank you

  11. Sandra Schneider January 22, 2016 at 9:17 am #

    Chronic Cerebro-Spinal Venus Insufficiency. It is real and it is associated with MS. Had 2 procedures by Dr. Sclafani-phenomenal doctor and human being. My veins remained open between the two procedures, one year apart, though at my advanced stage of MS, I saw only temporary benefit. I was awake during the procedure, and it was excruciating. I saw the blockages on the screen prior to the ballooning, so I can attest to the fact that I did in fact have it. I also required a stent in my renal vein for Nutcracker Syndrome-not as ballet-worthy as it sounds and the cause of many unexplained problems I had had since my youth.

  12. Christopher January 22, 2016 at 4:49 pm #

    Sandra…

    The term CCSVI is real, yes. And no one is disputing that. It is associated with MS only because of the research paper that Dr. Zamboni published, and because other medical researchers are looking into it. There is no validated scientific proof that it is safe or effective yet for MS, only anecdotal evidence–which is just what patients relay by their own subjective experience. Without actual physical proof, it is still an experimental procedure that is also very risky (dangerous). The biggest problem is that the doctors are not explaining the concept completely. Do they have healthy and non-healthy (meaning having MS) without blocked veins to compare with? Also, there is a MRI procedure–even though it’s expensive and complicated–to measure excessive amounts of iron in the brain. They mostly use it to help diagnose ADD and other ‘heritable’ diseases. Having excess iron in the brain doesn’t really get removed by better blood flow. It is fat soluble, so it is a mineral that is stored by the body and would need another mineral to bond to to be displaced–usually a chelating agent. Also a diet rich in eggs, calcium and fiber will inhibit iron absorption. Excess iron in the brain has indirectly been associated with neurodegenerative diseases, based on studies with inherited iron dysregulation disorders in the brain. But the only viable treatments for the inherited disorders so far have been antioxidants and chelating agents, and using drugs to treat the symptoms. Excess iron in the brain can’t just be treated like excess iron in the blood where phlebotomy is used to rid the body of excess iron. The same can’t be done when it’s stored in an organ. It has to be used up or removed by a chelating agent that binds it and pulls it out.

    Please don’t get me wrong… I am not trying to dissuade you from doing something you believe is helping you. God knows this disease is horrid, and we all need some hope of beating it. But as a scientist I believe there are very important questions to ask to keep everyone as safe as possible too, and reduce the amount of hurt and complications. Some good questions to ask: How many people have been treated, and what have been the independently verified positive results, if any? How risky is the procedure? Does the risk go up in subsequent procedures? What are the independently verified results in a large population–basically peer reviewed research and clinical trials (Phase 2, 3 and 4)? And the most important question… How much has it actually helped you, and is that worth the risk?

    Progressive MS is horrible, and there is woefully little in the way of treatment. So I completely understand where you are coming from, Sandra. Unfortunately a lot of these thoroughly untested procedures are very risky and unproven as of yet. There are other therapies and drugs being developed all the time. And the recent advances in stem cell technology have opened up new clinical trials all over the US as of right now. Even though these are clinical trials, there has been a lot more science behind the safety and efficacy, fora longer period of time, and with more patients, than other new therapies with less testing and smaller patient samples.

    I wish you success in whatever you choose, and that it brings you more than just temporary relief. I wish us all that.

    • Sandra Schneider January 22, 2016 at 6:29 pm #

      Christopher, thank you for your detailed and extensive reply. I am not a CCSVI expert. Please see the writings of Joan Beal. She is very involved in CCSVI and has fought hard for her husband, Jeff, who has benefited greatly from the procedure-unfortunately I did not. She is generous in her desire to engage in lively discussion about CCSVI and does have science to back up her view. I wish you well.

      • Christopher January 22, 2016 at 10:58 pm #

        Hi Sandra.

        I went on Joan Beal’s website, and there is good information, but there’s a big problem… she’s not a doctor. And she’s falling into a trap many people do–including myself at times–in using information that’s easily available in the wrong way. Most of the information she cites as proof of brain perfusion insufficiency as a cause of MS, going back 170 years, is actually explaining the discovery of the breakdown of the tight epithelial junctions–the blood brain barrier. All of the tests are autopsies, so it is unclear if faulty veins are a cause of lesions (which they are, in a way), or an aftereffect of the scar tissue in the brain (the lesions). This really has nothing to do with better blood flow, and everything to do with some as yet unknown factor contributing to the breakdown of the blood brain barrier in those areas. Any blood borne products, including the blood itself, besides oxygen, glucose or ATP, and some other nutrients, are toxic to the brain. Compared to the pristine nature of the brain and CNS, the blood is a sewer. And they are purposely separated.

        The videos on her site are unfortunately worse. Most are just professors and doctors rambling on about their beliefs and hypothetical ideas. Which is fine, but not the way it’s presented as definitive proof of something. The experts present very little hard science of definitive independently verified conclusions. What little proven facts they do provide is rambling and confusing. And the video interview with Dr. Zamboni is the worst I’ve seen yet. He basically doesn’t say anything very coherent, and Ms. Beal doesn’t help by just repeating technical terms that are way out of context. Dr. Zamboni’s 60 Minutes interview is much, much more coherent and understandable–and it actually made a lot more sense, although he did admit himself in that interview that he needed a better patient survey as all of his results up to that point were based solely on anecdotal evidence.

        I think Ms. Beal is a victim of her own excitement and zeal over something new, and it has blinded her somewhat by a kind of myopia. It isn’t helpful. I also think we all need to be careful in this area, as we can get carried away and lose touch with very important critical thinking skills. We all need to temper that excitement about a new hope of halting progression and/or repairing damage with a very objective view of these supposed breakthroughs. It is vitally important to look at these things from every angle and perspective–even the ugly perspectives that may prove it non-viable or just not viable yet. Otherwise we could rush into something that could be more hurtful than beneficial, or at worst… lethal.

        I say keep researching and doing your homework. But try to get all sides. It only helps.

    • Vikki January 23, 2016 at 4:48 pm #

      Christopher, I would really appreciate your opinion on Lemtrada. I am starting in two or three weeks. I have researched for a year on this therapy, met with three top neurologists in New York, and know many people on this medicine. But you seem to research a lot and I would love your opinion if you are willing to share.

      • Christopher January 23, 2016 at 6:34 pm #

        Hi Vikki.

        Those neurologists would definitely know a lot more than me. It seems to be a pretty good monoclonal antibody therapy, but it does carry some risks. Actually it looks like more risks than other mAbs, like Tysabri. The dosing is different, and so there’s a lot less of having to go for infusions like other mAbs. It seems to stay in your system longer and continue it’s effects for 4 years or more, which is actually both kinda cool and a little concerning as well because it means it doesn’t clear your system rapidly. The autoimmune problems it can possibly cause, secondary to MS, are far more concerning. There also is a risk of susceptibility to infections and malignancies due to a weakened immune system. And there is also the lurking risk of PML just like with other monoclonal antibody drugs, and Tecfidera. This shouldn’t scare you off, but it’s very important to be aware and weigh the risks with possible improvement of MS symptoms. It definitely means that you will have to be extremely diligent in watching your health, and never missing any regular blood tests–usually monthly, indefinitely. Also contact your doctor immediately whenever there is a change in your health, or new symptoms or worsening older ones that come up. Other than that it seems like a competent drug for halting or improving MS symptoms for now. At least until the next class of drugs, and/or more results are available for stem cell therapy and genetic engineering therapies. Good luck with whatever therapy you choose. I don’t know if this helps you, as it doesn’t really tip the scale in either direction. I can say though that most of the new drugs out there come with significant risk since they all alter immune function, which is probably the most important and most complex system in our physiology.

        • Vikki January 24, 2016 at 1:51 am #

          Hi Christopher, thank you for your observations on Lemtrada. The dosing is five days the first year and then three days twelve months later. As of this point there have been no cases of pml in either the clinical trials or in any of the patients since it was approved worldwide, at least so far. I agree there are some risks, and I had to sign papers committing to monthly bloodwork for five years. But until stem cells are approved, there is nothing else on the market that will keep my ms at bay.. I have tried every drug except Tysabri, and my jc risk is 1 in 150 so that’s not a risk I am comfortable able with. I’m hopeful that Lemtrada will stop the relapses and progression. Any other benefits would be a bonus.again, thank you.

  13. Steve Schone January 22, 2016 at 5:41 pm #

    Everyone here interested in something like CCSVI should look into Lemtrada. It’s new and definitely working for most people with RRMS.

    • Vikki January 23, 2016 at 4:40 pm #

      Steve have you done Lemtrada? I am starting in two weeks.

  14. Pam I Am January 23, 2016 at 4:33 pm #

    I hate to admit it, but I succumbed to a “get-well-quick” therapy back in the early 90’s when I was first diagnosed with RRMS. The so-called “bee venom therapy” was all the rage; with newspaper articles and feel-good news stories about wheelchair dependent patients who were able to walk again after stinging themselves with bees. I distinctly remember watching a local news story of a woman who had reportedly dealt with severe mobility issues that ceased after applications of bee stings. She was dramatically recounting her story while the B-roll showed images of her frolicking through the park; sure-footed balancing on a fallen log.

    After reading a similar account in the newspaper, I tracked down the woman in the article, who kindly sent me a packet of information with instructions on how/where to obtain the bees, and what to do once I had them. So I purchased the bees from a beekeeper in Savannah and they were shipped to me in a priority mail envelope.

    I coaxed them into a clean mayonnaise jar containing an empty bath tissue roll and a bit of honey. Then they were sealed with a punched lid and stored in the pantry until I got up the nerve to do the “injections.”

    My husband actually did the stings for me. He plucked one out of the jar with a pair of tweezers and applied it to my thigh until it stung me. I can’t recall how many we did each session, but the ultimate result was that both of my thighs were intensely itchy, sore, swollen and bruised by the time I called off the experiment. My condition never improved for my troubles, and I was just lucky there wasn’t a worse outcome.

    I tend to be very cautious and skeptical by nature, so I surprised myself by falling for the bee cure hyperbole. It just so happened that the stories came out during the most vulnerable time of my MS journey–moving from RRMS to Chronic-Progressive (now called Secondary Progressive).

    Now when I see a headline about possible cures for MS, I barely read them. I’d like to be excited about some new drug or research, but frankly, all it does is put my guard up.

  15. Jan1 January 24, 2016 at 7:35 pm #

    Oh Pam, I do apologize if I unintentionally hit a raw nerve (oops–and no pun intended there, either) earlier in mentioning bee stings. I see now that you had actually tried that. What I mentioned earlier still holds true, in that each of us makes the best decision possible at the time. With MS, who would know? Thanks for detailing your experience.

    And I, too, do not get excited about “MS cures” that I see around me. I think I’ve just had enough of the advice and, “Oh, why don’t you try…x, y, z.” I’m not giving up; just trying to live life.

    And Richard, I thought of you during church this morning, as the word “hope” came up a couple of times. It’s a complex thing, I think–but does involve faith in something or someone. I think that who or what we choose to hope in, as I had said earlier, is at the core of hope–and, from what I read, different for various participants here.

    BTW, I’ve done a 180 in where we now attend in that prior to this it was all rather formal and liturgical, whereas now it is informal and casual (a true surprise to me personally in that I like it). One week, Billy Joel’s “Honesty” was sung, and in context. Does make me think more about the guts of it all.

    • Pam I Am January 25, 2016 at 8:59 pm #

      No worries, Jan. It was such a long time ago and completely out of character for me. I think God was sending me a much needed lesson to trust my instincts. I no longer allow someone else’s opinion to overly influence my own. So, I don’t mind relating that experience–perhaps it will be a lesson for someone else!

      And I got a chuckle out of your pun. LOL

  16. Sue in TX January 25, 2016 at 9:46 pm #

    A little over a year ago I heard an NPR broadcast about composer Jeff Beale. He accomplished much and not quite 50, and the reporter offhandly mentioned that he suffered from a serious MS attack but recovered thanks to CCvSI. I jumped out of bed and searched online, finding first his video testimonies and then the “science” behind dr zambonni’s hypothesis. I was hooked. I wanted this cure so much. I vowed to learn as much as I could and get it. Several days later, I discovered the negative and controversial sites. I read everything I could find. I realized I needed to not be so desperate for a cure. But I was devastated. I felt real grief that this treatment wasn’t the solution. In my reasearch, some scientists speculate that it isn’t the veins but the muscles around the veins that spasm and ccvsi may inadvertently be stimulating the muscles and preventing a spasm which may be restricting the vein. With regard to the teficadra ads, I felt the ads were written by people who knew no one with MS. I did not realize that I started making mumbling noises when the ad was on until my children pointed it out. Now we all make the scoff noise as the woman jumps into the pool. If only MS and its treatments were so wonderful.

  17. Jan1 January 25, 2016 at 11:09 pm #

    Pam, thanks for your reply. I agree with the instincts, the gut reaction–seems to be a voice worth hearing.

    Instead of bee stings, a few people have been talking with me about cannabis. I’ve never smoked a puff of anything, thanks to my late dad, a smoker who had COPD. Most people likely experiment with a cigarette at one point, often when young–not I: the smell did me in. I miss him.

    I do understand that there are related pot-type oils in certain states. Haven’t investigated and don’t plan to presently — I’ve reached a “What about this?” plateau for the time being.

    And Sue, I was about to cringe at the evening news, on when making dinner–but then realized I may have channel flipped when I had about four minutes to sit and relax… to a Tecfidera commercial that made me wince, and on The Hallmark Channel–nothing like polluting my beloved movie spot! Anyway, I just shook my head at that woman walking with ease, jumping into the pool as if not a care in the world. Hmm.

    Today, swimming itself, freestyle, was nasty–I’m just going 2x/week in winter with the will to stretch on land the other days. Usually it’s “just” the walk into and out of the place that I dread, but today it has been horrid all day with pain somewhat severe in my feet, back, head, and neck. (Wake me up from this nightmare, please).

    I’ll end with a revelation from a Hallmark movie: crickets: “always heard; seldom seen.” That is rather unrelated to anything here except for my earlier comment in which I was puzzled (didn’t quite get it). Then again, it seems to relate to the promises and visuals on that Tecfidera ad, come to think of it: promises made and heard, efficacy seldom seen.

  18. Jan1 January 25, 2016 at 11:11 pm #

    Oh, and like crickets — rather grating and annoying!

  19. Dale January 25, 2016 at 11:46 pm #

    Anyone else with the biotin Facebook group trying to reproduce the clinical studies in France? I’ve been following them, so far the biggest advantage seems to be a decrease in urinary incontinence for many folks. Myself as well, I started with the biotin but took a break electing to not want to explain a white powdery substance in my bags on a trip to Colorado. But I do wish I’d tried some of those funky baked goods to see if marijuana helped at all…..

  20. Andrew January 26, 2016 at 8:24 am #

    I would like to hear more from people who know anyone’s reported experience who has used medical cannabis. I live in a state that has only approved cannabis oil for certain seizure disorders. I have friends in California and Seattle who have discussed the relief they have gotten. I understand that of the two primary active ingredients, THC and CBD. it is the CBD that primarily effects pain and spasms. Since these ingredients loose their potency when exposed to air, they cannot be made into a pill or capsule. Thus an oil in a gel casing was the first Rx., Miranol. But people had trouble titrating the dose. Now a Canadian/UK pharmaceutical is in the last stage of human trials. It is CBD (non-psychoactive like THC) that has been put in a sealed, contained delivery unit similar to an asthma inhaler. Patients take a couple “puffs” and wait twenty minutes to see if relief is achieved before taking more to figure the workable dose for them. I believe it is called Sativex. In general, my main caution about most smoked versions and some edible products is the fear of anything adding to fatigue and the “couch-lock” experience some people seem to find desirable. Friends in California tell me that certain strains are particularly for MS as it doesn’t create this effect.

  21. Sue in TX January 26, 2016 at 10:53 am #

    Jan1, I am having trouble walking distances and want to try swimming as my exercise. Can you tell me (and tecfidera ad execs ;)) what a typical work out is like in the pool for you? Freestyle is difficult for me because of turning head and vestibular issues. I’ve considered getting a snorkel so I could freestyle without headturns. I also need to change muscle groups often to avoid fatigue, so I have experimented with alternating laps with using paddle board and various strokes. I would love any suggestions. Especially about ideas on how to build endurance. With regard to advertising, if only medical marajuana , which is prescribed for relieving pain and spasms in MS, could be advertised on TV. that commercial would be something to see!

    • Jan1 January 26, 2016 at 6:02 pm #

      This is a reply to Sue (and rather long—perhaps okay, since Richard has a new post)… Sue, if I truly allow myself to face facts, I really can’t walk. (Around the house, yes. But out-and-about: not really. If not using a scooter, a grocery cart doubles as a “walker incognito.”) So I can’t even walk around the block with my husband (who drove me to a neighbor’s holiday party – and they live immediately behind us. As in, right there.)

      That said, (and if Tec mktg. writers look at this, don’t. Just don’t—be ethical, not $$$$ motivated!) We have a pool (some call it a glorified bathtub) at home, so I swim laps/stretch 6-7 days a week, mid-April through the first week in October in the morning).

      So to answer your Q right now in the winter, I’ve picked up a couple of things on my schedule (freelance work; a Bible study) and really need that for my sanity. So, with that, errands, grocery, and the longer time needed, I’m swimming a mere 2x/week at the indoor community pool (also a good spot for jaw exercise, as I have met friends there!) but am determined to stretch, do ankle lifts (stand; go on your tippy toes and back and repeat as able), and squats (in the bathroom and holding on to the counter). My husband (an avid exerciser) helped me – sit as if sitting on a chair, with lower-to-upper legs coming into a right angle.

      I HAVE to do this, as I’m not the 30-something healthy person my head still thinks I am. (And feel free to hold me accountable, as I need that, too).
      I (shh) climbed a ladder in my closet last week verrrry slowly and carefully a few times to place some things up high—wow, that showed me just how much leg strength I have lost. (And no, not a good idea to do: all, please note that. The former pro skater in me justified it with my former knowledge of good balance. Or so I thought—It really wasn’t wise).

      Back to the swimming, I do still freestyle. No flip turns (couldn’t do them when healthy, either!), but my neck has been sore lately. For that, some head rolls during the day. But if you can paddleboard, then your leg strength is better than mine. So to stay in the pool, it seems to me that your trying various strokes sounds like a good idea: overall, whatever works (and doesn’t hurt too much or make you nauseous).

      Perhaps if you can get to a stationary bike (gym?), then that could help with endurance? And try the backstroke? The pool where I go has a “river” section with strong currents that I mostly float around in but have seen people walk against the current – that could be good for us both and a way to build endurance in the pool. If none is available, then perhaps ankle weights in the pool? I’ll be prudent and caring and mention that anyone should think of consulting with one’s doctor (but I don’t—I just try whatever, see what does/does not work and run with that).

      I need to run—not sure if that was of help? Jan

  22. Sue in TX January 26, 2016 at 11:35 am #

    Andrew, I think the fatigue for some medicinal pot strains is minimal based on the news reports. Cannabis sativaL. strain is called “charlottes web”, is in the press a lot and several prime time news shows. It is used for seizures and medical conditions because it doesn’t cause a buzz (it has less than 0.3% THC ) but it has analgesic and inflammatory properties likely due to its high amts of
    Cannibidiol . I think the medical documentation that it reduces pain and spasms for MS sufferers is convincing. I’m guessing though, it might be most beneficial at night to reduce pain and spasms in case it also relaxes the mind a bit. The reason I have not tried it is because of its illegality in various states and that employers can terminate someone for medicinal use in off hours. For MSers, I think it comes down to how desperate one is to
    reduce pain and spasms and ones particular employment situation. What odd considerations for managing ones MS symptoms. Please let me know more about what you discover.

    • Andrew January 27, 2016 at 5:27 am #

      Thanks Sue. My friend in California, who has familiarity with some medical dispensary personnel, told me a strain called “Blueberry” has been very well received for MS patients. Re. the illegality, few people know that among the huge “budget bill” that was last approved by Congress to keep the government open, etc. that a provision was approved to end any federal prosecution roles for medical cannabis dispensaries and patients with legal prescriptions from said states. Thanks for your input. So I wonder if this has any impact on an employers past concerns about having employees breaking federal law in spite of state law legalization.
      Along with the concerns expressed by Pam, I think that it may take doctors some time to get information and the courage to write prescriptions. I have a lot of knowledge about literature on this drug and it appears there are relatively few adverse reactions and certainly none to compare to many other pharmaceuticals. Contraindications can be a reduced effectiveness or spiking effects of anti-depressants. And it might add to the effects of other prescribed pain medicine. A major category needing more research is potential exacerbation of some heart conditions. A general rule of dosing for cannabis (as well as anti-anxiety/benzodiazepine medication, is the lowest dose and frequency of use that helps, the longer the benefit is achieved and less likelihood of escalating tolerance.)

  23. Pam I Am January 26, 2016 at 4:47 pm #

    Medical cannabis is now legal in my state, and requires a prescription from a physician that has an established relationship with the patient. I asked my doctors about it and they were both reluctant to consider it. One reason is because there are not enough controlled studies about effective dosing, behavior of different strains. and any long-term side effects or contraindications. I would love to reduce my spastic pain but I had to agree that it may be premature to go that route.

    On the other hand, I was on Rebif for several years and it completely ruined my thyroid gland. I ended up with a huge goiter and multinodular thyroid and went through two surgeries to finally remove the whole twisted thing. During the procedure, one vocal cord was paralyzed and I could barely speak for over 6 months. My voice is much better now but will likely never go back to normal. And my naturally speedy metabolism has been replaced by a daily thyroid pill that has allowed my weight to creep up. Oh, and my MS progression while on Rebif didn’t change at all.

    So, cannabis or Big Pharma? Six of one; half-dozen of another, if you ask me.

  24. Jan1 January 26, 2016 at 6:04 pm #

    Gee, looks as if everything has side effects. So I’m sticking with the “all pain, no gain” approach to MS. Well, and some stretching, rest, and better eating.

  25. zoots January 26, 2016 at 9:12 pm #

    This is going way off topic, but I’ll add a few points. My wife has MS, and we have been trying lots of alternative treatments for the past few years.
    CBD oil is perfectly legal, and can be ordered on Amazon. My wife took it for about 8 months, and it did help with nerve pain. The effect seemed to wane afetr 6 months.
    Biotin seems to be helpful for MS, and appears to be quite safe and inexpensive. Some neuros are already prescribing it, but it can be had on the internet with no prescription. It supposedly helps repair, but doesn’t stop relapses.
    Vitamin D has been proven to help MS. 10,000 iu is now being deemed as safe for MS’rs. EVERYONE with MS should be taking at least 5,000 IUs a day – thats a no brainer.

  26. Jan January 28, 2016 at 9:38 am #

    Zoots, thanks… I take Vitamin D (likely not enough) but cannot tolerate fish oil (even enteric-coated). Any opinion about Cod Liver Oil? (I have used Carlson’s in the past and may use it again).

    And, regarding the CBD oil, it just seems that many things wane in time: that, Solu-Medrol infusions… interesting.