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Gadzooks! Zounds! Great Gooble Gobble! Late last week Wheelchair Kamikaze received its one millionth page view. 1,000,000! I’m absolutely gob smacked, even though I’m pretty sure about half a million of those page views can be directly attributed to my mother.
In the nomenclature of the Internet, each page view is just what it sounds like, an instance when somebody finds their way to a specific website through a search engine or link and gives it a peek. So, in the four years and 11 months since its inception, my modest little abode on the Internet has been looked at by folks 1,000,000 times, a figure which truly boggles my mind. People from all over the world have visited this place; the stats provided to me by Google show that in the last month alone Wheelchair Kamikaze has been frequented by people in (in alphabetical order): Australia, Belgium, Canada, China, Costa Rica, The Czech Republic, France, Germany, Iraq, Israel, Luxembourg, Malaysia, Mexico, The Netherlands, New Zealand, Norway, Poland, Saudi Arabia, Serbia, Spain, Sweden, Switzerland, Ukraine, United Arab Emirates, United Kingdom, The United States, and Venezuela. Holy crap!
In all honesty, I never expected more than a couple of dozen people to ever look at this thing, as when I started Wheelchair Kamikaze I wasn’t even all that sure of what a blog actually was. I’d been quite active on several online MS forums for a number of years, and during that time several fellow forum members intermittently urged me to start writing a blog, a notion to which I wasn’t all that favorable. I’d never really ventured into the “blogosphere”, and my conception of what a blog could be was fairly limited. In my mind a blog was pretty much just a sort of online diary, and I really didn’t think that what I did or thought would be of interest to anybody outside of the small sphere of human beings who actually knew me.
It wasn’t until my sorry ass landed in a wheelchair, and, at my wife’s urging, I attached a camera to that wheelchair and made a few videos of my wheelchair rides through Manhattan – which friends and family found amusing – that the idea of staking out my own virtual homestead took hold. Okay, I thought, a blog could provide me a place to house the videos and photos I took from my wheelchair, and maybe the occasional scribble or two, in a spot that would be easily accessible to the relatively few people who knew I existed. Never in my wildest dreams did I imagine that this site would provide a conduit through which a part of me could reach out and touch people all over the world, and that in turn these virtual connections would enrich my life in ways that are literally beyond words.
Wheelchair Kamikaze has provided a kind of method to the madness of my being stricken ill, and has many a time proven to be a lifeboat of sorts, helping me keep my head above the churning, tempestuous psychological waters of dealing with my chronic progressively disabling disease. For that I am more than grateful, and to all of the wonderful people who have contributed to those 1,000,000 page views I offer my most humble gratitude, which hardly seems sufficient given the remarkably positive impact creating this blog and interacting with those who view it has had on my life. It may be overstating it to say that Wheelchair Kamikaze has been my salvation, but it wouldn’t be overstating it by much. So, thank you, thank you, thank you.
Okay, with that bit of mushiness done with, let’s get to the business at hand, a rundown of various pieces of MS related news that have garnered my attention over the last few months or so. As usual, these pieces range from the sublime to the ridiculous, and I hope you’ll find them pertinent, useful, interesting, and/or amusing. On with the show…
♦ A new MS drug called Lemtrada has been approved for use in Canada (click here), Australia (click here), and the European Union (click here), but, surprisingly, not here in the United States, where the FDA rejected Lemtrada’s application for approval (click here). The FDA’s rejection comes as something of a shock, as it was widely expected that Lemtrada would receive the FDA’s authorization, despite the problematic side effect profile of the drug.
Lemtrada isn’t actually a new drug; in a previous incarnation, when it was called Campath, it had been used successfully to treat leukemia and lymphoma since 2001. The drug is a monoclonal antibody, a member of the same family of drugs as Tysabri, and works by dramatically depopulating immune system cells in treated patients. Lemtrada is so effective in wiping out its immune cell targets that it in effect prompts the body to “reboot” the immune system, much the same way that certain stem cell therapies attempt to do. The idea is relatively straightforward – wipe clean a person’s immune system, in the hopes that when that immune system is reconstituted it will no longer have an appetite for the patient’s own central nervous system cells. This relatively straightforward concept has proven somewhat tricky to pull off in practice, but Lemtrada does seem to accomplish this feat over an extended period of time.
When used to treat MS, Lemtrada is given intravenously in five day courses two or three times over a 12 month period. After this initial one-year period of dosing, clinical trials have shown Lemtrada to be remarkably effective when given to relapsing remitting patients with active disease. One study (click here) showed that five years after treatment 65 percent of such patients were free of clinically active disease, 72 percent were relapse free, and 87 percent of Lemtrada treated subjects were free of sustained accumulation of disability. In other words, five years after treatment, well over half of the patients given Lemtrada showed virtually no signs of multiple sclerosis activity – they were, for all intents and purposes, MS free.
What then, is the problem? Unfortunately, Lemtrada’s effectiveness comes at a price. Approximately 30 percent of Lemtrada treated patients develop autoimmune thyroid disease, which, though not to be pooh-poohed, can be effectively treated using conventional therapies. More disturbingly, some patients develop an autoimmune blood disease called immune thrombocytopenia (ITP), which, if not caught in time, is often fatal. Patients can be effectively monitored for ITP, but the fact that Lemtrada leaves patients susceptible to the potentially deadly disease is problematic, to say the least.
In those places where it has been approved for use, Lemtrada poses RRMS patients quite a dilemma. Is the prospect of being disease-free five years after treatment worth the risks associated with autoimmune thyroid disease and ITP? Quite the conundrum, but I would think that at least some folks being ravaged by highly active MS, experiencing relapse after crippling relapse, would certainly be willing to take the risk. As we’ve seen with Tysabri, patients can be quite tolerant of risk when a drug dramatically increases their quality of life. It will certainly be interesting to watch as the Lemtrada saga plays out in the regions that have given it approval.
Just as a side note, Genzyme, the drug company that manufactures Lemtrada, engaged in some sleazy activity several years ago by pulling Campath off the shelves when it appeared that the drug – newly named Lemtrada – would sail through the approval process for use as an MS therapy (click here). Why pull Campath off the shelves? Because Genzyme planned to dramatically hike the price of the drug when they changed its name from Campath to Lemtrada and switched focus from leukemia/lymphoma patients to those suffering from MS. When used to treat leukemia or lymphoma, a typical course of Campath treatment cost about $60,000. Since MS patients would need a far lesser dose of the drug, the cost for a course of multiple sclerosis treatment would only be about $6000. So, Genzyme made Campath unavailable and only planned to reintroduce it as Lemtrada once it was approved for use in MS patients, at a dramatically higher price, of course.
Although the drug has been approved in Canada, Australia, and EU, those places restrict the price of drugs, something that is unheard of in the US, where drug companies can pretty much charge whatever they please. And now the FDA has failed to approve Lemtrada, foiling Genzyme’s Machiavellian business plans. What goes around comes around, as they say…
♦ Having mentioned Tysabri and the fact that it improves the quality of life for many of those taking it, here are two studies that illustrate just that. One study (click here) shows that Tysabri treated patients require less sick leave from work 12 months after initiating treatment. This retrospective study demonstrates that one year after initiating Tysabri treatment, MS patients required 33 percent less sick leave than before they started on the drug. Another study looked at MS patients requiring inpatient hospital stays, and found that Tysabri treated patients exhibited “significant reduction in the percentage of patients with MS related inpatient stays, MS related inpatient costs, and length of stay” (click here).
Most MS patients know that taking Tysabri carries with it the risk of developing a potentially deadly brain infection called PML. Now that Tysabri has been on the market for a considerable amount of time, we have reliable figures as to just what the risks are of developing PML while on the drug. The latest figures indicate that patients who are JC virus negative (JC virus is the pathogen that causes PML) have very little risk of developing the infection, about a 1 in 10,000 chance.
For patients who test positive for the JC virus, two factors come into play in determining their risk of developing PML. The first is whether or not they’ve previously been treated with immunosuppressive drugs, and the second is the amount of time they’ve been on Tysabri. JC virus positive patients who have been treated with prior immunosuppressants have a 1 in 556 chance of developing PML during the first two years of treatment, and a 1 in 89 chance in years two to four.
JC positive patients who have not been treated with prior immunosuppressants need to keep a careful eye on the amount of JC virus antibodies present in their blood, which can now be checked by blood tests. Depending on these levels, the chance of developing PML for these patients in the first year of Tysabri treatment ranges from 1 in 1000 to 1 in 10,000, in years two through four from 1 in 123 to 1 in 3333, and in years four through six from 1 in 118 to 1 in 2500.
The above figures can be viewed nicely in the slideshow below. Click the symbol in the lower right-hand corner of the slideshow to view fullscreen (if that doesn't work, right-click on the symbol and choose "open in new tab"). I’d advise all Tysabri patients to familiarize themselves with these numbers, and make risk/reward calculations based on their individual circumstances, in conjunction with their neurologists. Knowledge is power, people; arm yourselves accordingly.
♦ One of the big problems I have with all of the currently available MS treatments is that they don’t do anything at all to address the root cause of the disease. How can they, since the root cause of MS remains completely unknown? Several recent discoveries may shed some light on that elusive cause, which increasingly appears to be at least partially infectious in nature. In one study, researchers found evidence that a soil-based bacteria, which has rarely if ever previously been found in humans, may be prevalent in MS patients (click here). Researchers reported that “that we identified this bacterium in a human is important enough, but the fact that it is present in MS patients is truly significant because the toxin targets the exact tissues damaged during the acute MS disease process.”
Another study found toxins secreted by bacteria associated with sinus infections in the cerebrospinal fluid of MS patients (click here). This is important because most blood-borne bacteria are blocked from entering the central nervous system by the blood brain barrier, nature’s way of keeping the brain and spinal cord isolated from the nasties that can infect other parts of the body. Infections in the sinuses, though, can circumvent the blood brain barrier by leaking directly from the sinuses into the central nervous system, opening up the possibility that nose to brain transport of bacterial toxins may play a key role in the MS disease process.
Though studies such as these are far from definitive, they do at least attempt to answer THE key question regarding MS: what in heaven’s name causes the freaking disease? There will never be a cure for the MS until that query is answered, and far too little time, effort, and money is currently being spent attempting to unravel this all-important mystery. One would think that such inquiries would be at the forefront of MS research, but instead, because most research is funded by pharmaceutical companies who must turn a profit to survive, the majority of MS research is currently targeted at finding new and better ways to suppress the immune system, resulting in ridiculously expensive drugs that may tame the disease but will never cure it. I’ll practice some self-restraint and stop this line of argument now, before I start ranting and raving and giving myself and my readers a migraine. Arghhh!
♦ Okay, on to one of my favorite subjects, the wonderful world of asinine research. Crack researchers in Germany have determined that spasticity is a problem for MS patients (click here). When I say “crack researchers”, I mean that the researchers must have been smoking crack. How else to explain them wasting time and precious research money conducting a study that confirms what is obvious to anybody suffering from MS spasticity, or anybody observing, even from a distance, somebody suffering from MS spasticity? The researchers could have spared themselves a lot of effort by just asking me or some of my MS buddies about spasticity. Spasticity sucks. End of study.
For those who are blissfully unaware of MS spasticity, the phrase refers to muscles that are rendered stiff and nonfunctional because they receive nerve signals to contract but not the requisite impulses to relax due to the fracked up nature of the MS ridden central nervous system, replete with faulty wiring and short-circuits. Spasticity can afflict almost any muscle in the body, and often causes considerable disability and pain. In fact, many MS patients consider spasticity their most troublesome symptom.
Now, through their earthshaking work, German researchers have, after fastidious and meticulous investigation, determined that “MS patients with spasticity suffer a significant burden because of resulting disabilities and reduced quality of life, especially in cases of severe spasticity”.
HOLD EVERYTHING!!! LIGHT MY PANTS ON FIRE!!! Do they mean to tell me that my twisted and clublike right arm and my clawlike right hand are not doing me any favors, and are in fact a “burden”? That my quality of life might be better if putting on a shirt, sweater, or jacket didn’t require my gimpified body to attempt the moves of a circus contortionist? That the “burden” of my disease would be less if I – gasp – didn’t have any spasticity? And all this time I’ve been gazing upon my twisted and useless appendages with such warmth and affection. Stupid me!
Let me save any researchers currently working on similar studies a lot of sweat and elbow grease. Not only does spasticity decrease quality of life, but weakness and paralysis can also be quite “burdensome”. Yup, arms and legs possessing all of the strength of a fart in a hurricane should not be counted as one of the pleasures of life. Also, bladder and bowel issues are not nearly as much fun as a night at the GiggleSnort Motel. That’s right, contrary to popular belief, urinary frequency and urgency don’t make for a whooping good time. Yes, I’d like to down a couple of pints of icy cold beer as much as the next guy, but I’d better be sitting on a toilet when I do so, because you could calculate the time it takes for the liquid to go from mouth to urethra with a stopwatch. Now, that might be the subject for some fascinating research.
Good grief…
♦ Being “retired” and grappling with a chronic debilitating illness leaves one with plenty of time to contemplate the mysteries of life, wondering just what the hell it’s all about. Gratefully, I came across the following video, in which Father Guido Sarducci (comic Don Novello) explains The Secret of Life. I actually recall the good Father doing this bit on Saturday Night Live back in the late 1970s, when the cast included such greats as John Belushi, Gilda Radnor, and Dan Aykroyd. I remember loving this monologue back then, and the intervening decades have done nothing to diminish its effect on my funny bone. Yup, life is a job, we’re all just here collecting our paychecks, hoping that our balance sheet comes out in the black when all is said and done…
Ciao for now…
♦ Having mentioned Tysabri and the fact that it improves the quality of life for many of those taking it, here are two studies that illustrate just that. One study (click here) shows that Tysabri treated patients require less sick leave from work 12 months after initiating treatment. This retrospective study demonstrates that one year after initiating Tysabri treatment, MS patients required 33 percent less sick leave than before they started on the drug. Another study looked at MS patients requiring inpatient hospital stays, and found that Tysabri treated patients exhibited “significant reduction in the percentage of patients with MS related inpatient stays, MS related inpatient costs, and length of stay” (click here).
Most MS patients know that taking Tysabri carries with it the risk of developing a potentially deadly brain infection called PML. Now that Tysabri has been on the market for a considerable amount of time, we have reliable figures as to just what the risks are of developing PML while on the drug. The latest figures indicate that patients who are JC virus negative (JC virus is the pathogen that causes PML) have very little risk of developing the infection, about a 1 in 10,000 chance.
For patients who test positive for the JC virus, two factors come into play in determining their risk of developing PML. The first is whether or not they’ve previously been treated with immunosuppressive drugs, and the second is the amount of time they’ve been on Tysabri. JC virus positive patients who have been treated with prior immunosuppressants have a 1 in 556 chance of developing PML during the first two years of treatment, and a 1 in 89 chance in years two to four.
JC positive patients who have not been treated with prior immunosuppressants need to keep a careful eye on the amount of JC virus antibodies present in their blood, which can now be checked by blood tests. Depending on these levels, the chance of developing PML for these patients in the first year of Tysabri treatment ranges from 1 in 1000 to 1 in 10,000, in years two through four from 1 in 123 to 1 in 3333, and in years four through six from 1 in 118 to 1 in 2500.
The above figures can be viewed nicely in the slideshow below. Click the symbol in the lower right-hand corner of the slideshow to view fullscreen (if that doesn't work, right-click on the symbol and choose "open in new tab"). I’d advise all Tysabri patients to familiarize themselves with these numbers, and make risk/reward calculations based on their individual circumstances, in conjunction with their neurologists. Knowledge is power, people; arm yourselves accordingly.
♦ One of the big problems I have with all of the currently available MS treatments is that they don’t do anything at all to address the root cause of the disease. How can they, since the root cause of MS remains completely unknown? Several recent discoveries may shed some light on that elusive cause, which increasingly appears to be at least partially infectious in nature. In one study, researchers found evidence that a soil-based bacteria, which has rarely if ever previously been found in humans, may be prevalent in MS patients (click here). Researchers reported that “that we identified this bacterium in a human is important enough, but the fact that it is present in MS patients is truly significant because the toxin targets the exact tissues damaged during the acute MS disease process.”
Another study found toxins secreted by bacteria associated with sinus infections in the cerebrospinal fluid of MS patients (click here). This is important because most blood-borne bacteria are blocked from entering the central nervous system by the blood brain barrier, nature’s way of keeping the brain and spinal cord isolated from the nasties that can infect other parts of the body. Infections in the sinuses, though, can circumvent the blood brain barrier by leaking directly from the sinuses into the central nervous system, opening up the possibility that nose to brain transport of bacterial toxins may play a key role in the MS disease process.
Though studies such as these are far from definitive, they do at least attempt to answer THE key question regarding MS: what in heaven’s name causes the freaking disease? There will never be a cure for the MS until that query is answered, and far too little time, effort, and money is currently being spent attempting to unravel this all-important mystery. One would think that such inquiries would be at the forefront of MS research, but instead, because most research is funded by pharmaceutical companies who must turn a profit to survive, the majority of MS research is currently targeted at finding new and better ways to suppress the immune system, resulting in ridiculously expensive drugs that may tame the disease but will never cure it. I’ll practice some self-restraint and stop this line of argument now, before I start ranting and raving and giving myself and my readers a migraine. Arghhh!
♦ Okay, on to one of my favorite subjects, the wonderful world of asinine research. Crack researchers in Germany have determined that spasticity is a problem for MS patients (click here). When I say “crack researchers”, I mean that the researchers must have been smoking crack. How else to explain them wasting time and precious research money conducting a study that confirms what is obvious to anybody suffering from MS spasticity, or anybody observing, even from a distance, somebody suffering from MS spasticity? The researchers could have spared themselves a lot of effort by just asking me or some of my MS buddies about spasticity. Spasticity sucks. End of study.
For those who are blissfully unaware of MS spasticity, the phrase refers to muscles that are rendered stiff and nonfunctional because they receive nerve signals to contract but not the requisite impulses to relax due to the fracked up nature of the MS ridden central nervous system, replete with faulty wiring and short-circuits. Spasticity can afflict almost any muscle in the body, and often causes considerable disability and pain. In fact, many MS patients consider spasticity their most troublesome symptom.
Now, through their earthshaking work, German researchers have, after fastidious and meticulous investigation, determined that “MS patients with spasticity suffer a significant burden because of resulting disabilities and reduced quality of life, especially in cases of severe spasticity”.
HOLD EVERYTHING!!! LIGHT MY PANTS ON FIRE!!! Do they mean to tell me that my twisted and clublike right arm and my clawlike right hand are not doing me any favors, and are in fact a “burden”? That my quality of life might be better if putting on a shirt, sweater, or jacket didn’t require my gimpified body to attempt the moves of a circus contortionist? That the “burden” of my disease would be less if I – gasp – didn’t have any spasticity? And all this time I’ve been gazing upon my twisted and useless appendages with such warmth and affection. Stupid me!
Let me save any researchers currently working on similar studies a lot of sweat and elbow grease. Not only does spasticity decrease quality of life, but weakness and paralysis can also be quite “burdensome”. Yup, arms and legs possessing all of the strength of a fart in a hurricane should not be counted as one of the pleasures of life. Also, bladder and bowel issues are not nearly as much fun as a night at the GiggleSnort Motel. That’s right, contrary to popular belief, urinary frequency and urgency don’t make for a whooping good time. Yes, I’d like to down a couple of pints of icy cold beer as much as the next guy, but I’d better be sitting on a toilet when I do so, because you could calculate the time it takes for the liquid to go from mouth to urethra with a stopwatch. Now, that might be the subject for some fascinating research.
Good grief…
♦ Being “retired” and grappling with a chronic debilitating illness leaves one with plenty of time to contemplate the mysteries of life, wondering just what the hell it’s all about. Gratefully, I came across the following video, in which Father Guido Sarducci (comic Don Novello) explains The Secret of Life. I actually recall the good Father doing this bit on Saturday Night Live back in the late 1970s, when the cast included such greats as John Belushi, Gilda Radnor, and Dan Aykroyd. I remember loving this monologue back then, and the intervening decades have done nothing to diminish its effect on my funny bone. Yup, life is a job, we’re all just here collecting our paychecks, hoping that our balance sheet comes out in the black when all is said and done…
Ciao for now…
Your neighbours in Canada follow you as well! (daily by myself) as you are such an inspirational and adept writer!
ReplyDeleteThanks for the kind words, and my mistake for leaving out our northerly neighbors. I'm very much aware that Wheelchair Kamikaze is read by lots of Canadians, and I've made several Canadian friends through the blog. As a matter of fact, my wife and I got married in Montréal, but that had nothing to do with WK, since I was still officially amongst the "healthy" back then. We simply chose Montréal because we like the city so much.. Still, a fun fact…
DeleteMarc, congratulations on reaching the 1 million page visits milestone. This is a testament to the number of people you've inspired and entertained over the years. I'm glad to hear that the blog brings you as much enjoyment as it brings us. Thank you!
ReplyDeleteYou are quite welcome, Mitch. I count you amongst the best friends I've made via this newfangled contraption called the Internet, although I think we may have initially met (in a virtual sense) before I started the blog. Your blog (enjoyingtheride.com) has entertained and inspired multitudes as well. Despite our shared experiences as bloggers, I think one of our closest bonds is as rabid Red Sox fans, and haters of the Yankees. Priorities count, after all…
Delete1 million hits is quite an accomplishment. I know your writing is well respected across MS boards, as it should be. Your writing has been and is inspirational. I have recommended your site to quite a few fellow patients, people who love MS patients, and doctors.
ReplyDeleteAs for the ridiculous research, this one is even worse than the experiment showing MS patients had more cognitive difficulties in warmer temps. At least this one's methodology was better than the heat experiment when they took two different groups of MS patients and gave them cognitive tests with one group during the summer and another 4 or 5 months later. The groups weren't the same size, and they were small. They were so small just getting one or two smarter people in the cooler temps would throw the results. The results did come back as expected with heat making us struggle, but...However, that experiment at least lead me to try and determine a seasonal effect using Patients Like Me data. So that one at least had the potential to lead to some knowledge gain. I am at a loss as to what the knowledge or research the German study could spawn.
Thanks for your kind words, and for recommending my blog to others.
DeleteYou're right, as far as asinine research goes, this Spasticity study is one of the most asinine I've come across. I can only surmise that in a "publish or perish" environment, some researchers will publish anything to forgo the risk of perishing. What really boggles the mind is that studies such as this actually get published in legitimate journals. Is it any wonder that cures for disease are in such short supply, when so much time and energy is wasted on absolute drivel?
I'm glad that the "study" on cognitive deficits and warmer temperatures lead you to do some legitimate investigation. At least some good came of those researchers efforts…
Fortunately for all of us, MS has not robbed you of your brilliant mind. One million visitors is only the beginning as the rest of the world increasingly becomes aware of your informed, discerning, and wise perspective about MS and life in general. On several fronts, I find your website unparalleled by any other dealing with the topics you focus on. Though I frequently read elsewhere about MS research, your analysis is one I always learn from and trust. Your spiritual and emotional approach to coping with the impact of this devastating disease is both honest and inspirational. This is a calling I am sure you would not have chosen, but it is one you have answered in a way that illuminates life’s path for many. Thank you for accepting the call.
ReplyDeleteThanks so much, Judy. Your own work is illuminating as well, and hopefully your words will soon reach the masses via your recent publishing efforts.
DeleteYour right to surmise that chronicling experiences with a terrible disease is not a calling I would have chosen, but that call came collect. I'm simply trying to work off the charges… Gee, do people still make collect calls in these days of cell phones and text messages? Just one more thing to ponder…
Congratulations on one million views! You have a very strong following in Canada. (Thanks for reminding me about the sinus infection research.) You were the first blog I put on my blogroll when I started blogging about my MS. You make me laugh, cry, think and give thanks that you are there for all of us.
ReplyDeleteThanks very much, Jennifer. Gratitude for putting me on your blogroll, and I hope, on balance, the laughter generated by this blog outweighs the tears…
DeleteCongratulations on one million viewers. I am new to your site and it has been a pleasure. I have had MS for 8 years--irresolvable pain for 5 years, an unsuccessfull MVD this summer. All of this, has, of course, lead me to deep depression. Your site has made me feel less alone, makes me laugh regularly, and is the ONLY MS related site I follow. I am generally a practitioner of denial, but I love your site!
ReplyDeleteI'm glad that you like my site so much, but sorry that this damned disease lead you to it. I'm sure you know that depression can itself be a symptom of MS, although I'm not sure how one would discern whether or not a patient's depression is a symptom of their disease or the product of having to deal with the shitstorm that is MS. In any event, try not to suffer through it alone, as I know all too well that the black dog of depression can sometimes be worse than the disease itself. In any event, it's good to know that my shared thoughts have helped my fellow patients…
DeleteMarc: Gratefully, like you, I have an enormously supportive spouse, a sparkling 9 year old boy, a beautiful teenage stepdaughter, and a tenderhearted teenage step son. Not to mention a full-time job (thankfully still) and a coterie of family and friends. So while depressed, no imminent chance of me offing myself. I have very little cognitive (I think) and physical impairment, it is just this searing nerve pain in my face and crippling migraines. So I suppose I have what I have sometimes heard referred to as "silent MS." As you know, no matter the extent of your loving support, the suffering of pain is a solo endeavor. And, as surrounded as you may be, it is searingly lonely. Your work, alone amongst the infinite amount of crap on the internet, has made that process much less lonely for me. Plus, the Guido Sarducci clip made me laugh out loud at my desk today. The best cure for depression. As my father once told me, Rosanne, Rosanne, Adanna, its always something.
DeleteMark, you should be more shocked that your page hasn't hit 4 million views by this point. You are a vast wealth of knowledge with a great characteristic. You have the ability to "dumb it down" to the common man (such as myself) without losing the integrity of what you're trying to say in the process.
ReplyDeleteI'm a very mechanically inclined type of person, but I've never really understood medicine and things of that nature. After reading your posts, I feel confident that I would have no issue arguing the merits of a given medicine to anyone that needs to know.
As a change of subject, my disease has been progressing as of late. In the past, any time I've had an issue, it's cured with a 3 day trip to the hospital for a Solumedrol IV. However, I received my latest IV back in December for rather severe joint pain. It felt as though my wrists were both broken. The IV treatment took care of that for about a week, but it's been back with a vengeance ever since. My neurologist has scheduled for me to receive another set of MRI's tomorrow with the hospital's new 2 Tesla MRI. He's under the impression that the Tec Fidera isn't really doing what it needs to, and is considering bumping me up to Tysabri.
This has me a little worried, but it may be for the best. I know that I am clean of the JC Virus as of blood tests performed back in August. Time will tell if this is still the case. I'm just a tad apprehensive about the possibility of being bumped up to the next medicine. I hope for my own sake that all is well. I'll report back here with any news that I receive in the coming weeks.
Have a great day and keep up the engaging posts. I, for one, am glad to read them.
Jonathan, much of the medical research isn't really all that hard to understand, it's just presented in such a way as to dissuade nonmedical types from trying to penetrate the jargon. Of course, some of the research is quite complicated, but I think that much of the time it's written so as to keep the "sacred knowledge" confined to those anointed as members of the medical community. Knowledge is power, after all, and those with power are usually loath to share it.
DeleteI can understand your apprehension about being put on Tysabri, but if you are JC negative I think that the possible benefits far outweigh the risks. Just be sure that your neuro checks your JC status regularly, since one can be exposed to the virus at any time. Keep in mind that even JC virus positive patients with low antibody titers have a relatively low risk of contracting PML while on Tysabri, especially for the first couple of years. Best of luck moving forward…
Johnathan: Tysabri made me feel better than any drug I have been on since my MS diagnosis 8 years ago. I recently switched to Tecfidera, have only been on it for about 2 months, but am considering returning to Tysabri. I am sure you are aware of this, and Marc can rant much better than I, but make sure you apply for the financial assistance from Biogen. The co-pay, even with a good insurance policy, can be outrageous. My husband and I both earn over six figure salaries (for now), and I qualified for the financial assistance, which brought my monthly co-pay for the drug down to $10. There is a separate co-pay for the infusion itself. As Marc would say, fracked up that the drug company is making so much money on the drug (via what they charge and recover from your insurer), that they will literally PAY you to take it. An evil alliance. Still, I had a great experience with the drug and hope you do too. Plus, the two hours of alone time in the infusion chair was often the most relaxing two hours I had in any given month! I suppose that is a sad commentary on me. Best of luck.
DeleteI am especially fond of your senseless research posts and it is flat out amazing that there always seems to be another one available for your comments, to the edification and delight of us all.
ReplyDeleteNot at all surprised at the 1M mark - congrats!
Thanks, Daphne. I too am amazed at the amount of senseless research, but grateful that it provides good fodder for the blog. Hey, there are two sides to every coin…
DeleteCongrats on the milestone, Marc. If the right folks have done their research, perhaps we'll be able to break bread together soon.
ReplyDeleteHere here, I second that emotion. I do think there is hope on the horizon, as more researchers are finally looking beyond the concept of autoimmunity to seek out the underlying cause of the disease. It would be a pleasure to break bread with you…
DeleteOn a side note considering the rise of those on social security disability, one thing that really surprised me is how the life insurance industry really discriminates against those receiving disability, even if the cause isn't life threatening. In particular I worked for one major life insurance employer for over two years before I even knew that some individuals who are currently receiving SSI could actually qualify for traditional coverage.
ReplyDeleteThanks for that info, I wasn't aware that I could qualify for any life insurance. I'll have to check into that…
DeleteI'm only 32 and I can't seem to find any reasonable life insurance due to having MS. I've been looking on and off for the last 5 years to no avail. I have a 2 year old now, and I would really like something to benefit her, just in case something happens not disease related. Yet I'm ostracized due to my affliction.
ReplyDeleteWell, according to the previous commentor, perhaps there is some hope of finding a life insurance provider. This is something I am completely ignorant of, though. Can't say that I may huge fan of the insurance industry, though I am eternally grateful for the private disability insurance I received through my former employer. It does seem that there should be life insurance policies that would be specifically designed for people with chronic illnesses, but perhaps there are too many intangibles involved. I need to do some checking…
DeleteYou can at least get term life insurance with MS (and convert it to whole life if desired) - I am proof of that. Disability insurance is not an option.
DeleteCongratulations, Marc. Your posts are always filled with timely stats as well as humor and stark reality. Of course your photography is amazing as well as your quick wit. Thank you for all you do for all of us MS'ers out here.
ReplyDeleteYour gracious words are much appreciated. Thanks for mentioning my photography, I have a bunch of photos taken over the summer that still need my attention. Hopefully, you just prodded me into putting some work into them and getting them posted to the blog. Much obliged…
DeleteCongratulations! Any thoughts on the use of antioxidants? Looks like there might be some good news on the horizon...maybe - possibly - let's hope. Love your positive attitude. Keep up the good work! I enjoy reading your view on things. Thanks for that. Annie
ReplyDeleteI'm actually a big fan of antioxidants. I am under the care of a naturopathic doctor who works out of my neurologists clinic, and she is a strong proponent of antioxidants for those with neurodegenerative diseases. I have read some of the recent news about antioxidants, and my naturopath is checking out some of the compounds being mentioned. I will report back when I get some feedback, positive or negative… Thanks for your comment.
DeleteAre you looking in to MitoQ?
DeleteYes, mitoq is something I'm looking at. Was just talking about it today with my naturopath, think I'm going to be trying it soon…
DeleteI am as well, although I'm unsure about dosing and possible reactions with other supplements. Maybe I'm overthinking it. :)
DeleteAs ever thank you Marc and congratulations on the million mark. As I struggle toward 9000 on the TrailRider Tales blog I precisely understand the momentousness.
ReplyDeleteI particularly like the way that you present complex medical issues - always tinged by the peculiar injustice of the US system. I live i Australia where things are very different.
I am Secondary Progressive so the damage is already done and, as you and most of your readers will realise, the vast majority of research and consequent medication focuses on the earlier Relapsing Remitting stage. So complete is this bias that I generally skip (WK excepted!) most MS research reading.
However there turns out to be one drug that has relevance to conduction in de-myelinated nerves. Fampridine (AKA Fampyra) contains the active ingredient 4-amino-pyridine which is a potassium channel blocker. My understanding is that this transmission occurs sideways, out of the nerve, and so blocking it improves end-to-end conduction. To make some attempt to verify this (on my neurologist's suggestion) I tried stopping 4AP for a week The decline that week was sufficient for Ros (wife and carer) to question whether she could continue to care for me and the recovery, after that week was equally distinct.
The commercial brands (the two F words above) cost $600 per month which we could not afford but I have 4AP compounded in a slow release form (important) for $50
One reason research focusses on RRMS is that the population is much larger, and it is much easier to construct a trial with measurable outcomes (they mostly just use MRIs to count new lesions - that is pretty easy and cheap). Some drugs may in fact be effective for people with SPMS as well, but it simply does not make business sense for pharmaceutical companies to try to construct a trial for SPMS or that even smaller cohort, PPMS, and enroll sufficient numbers of people in it, when many people can and will get the drug prescribed by their neurologist anyhow. I am one of those SPMS people, and am actually doing quite well on Tysabri - no panacea, but it has objectively helped a rapidly progressing course slow down.
DeleteFor those with SPMS the emergence recently of The International Collaborative on Progressive MS is exciting.
DeleteI found it hard find any figures for the comparative numbers of RR and SP MS sufferers. It stands to[ reason that there are more of the former as the average time before people "move on" is 20 years therefore I imagine many die.For those with SPMS the emergence recently of The International Collaborative on Progressive MS is exciting.
I found it hard find any figures for the comparative numbers of RR and SP MS sufferers. It stands to[ reason that there are more of the former as the average time before people "move on" is 20 years therefore I imagine many die.
Thanks for your comments, David. It is indeed incredibly frustrating that we "progressives" have by and large been ignored by the MS research powers that be. Of course, this "willful ignorance" is due in large part to financial concerns, as there are too few of us to warrant the expense of the research and development of drugs specifically to treat our flavor of the disease. Of late, though, we have been getting more attention, and there are several trials underway specifically aimed at treating progressive MS. One can only hope that tangible results will be seen sooner rather than later.
DeleteGlad to hear that you've had success with 4-AP. I tried both 4-AP and Ampyra (as it is called here in the states) with no luck. Still can't understand how the Pharma company that makes Ampyra was able to get a patent on a compound that has been available for decades as a commercial avian poison, but they somehow managed the trick. Some patients have told me that Ampyra seems to be more effective than 4-AP, but I don't know that this has received any scientific interest. No reason to look a gift horse in the mouth, though, as long as it works for you, hurrah!
MS Patient Fights FDA Over Rejection Of Genzyme's Lemtrada: http://seekingalpha.com/instablog/957061-chris-demuth-jr/2568201-ms-patient-fights-fda-over-rejection-of-genzymes-lemtrada
ReplyDeleteTwo MS studies posible cause -one in Denmark involving 350 MS patients reveal they have the HERV retrovirus. Study in spain reveal 1600 patients with the HERV retrovirus. Are these studies getting ignored?.
ReplyDeleteThey are certainly not being ignored by me, as I believe the HERVs theory has the potential to be a paradigm shifter not only for MS but for a wide range of diseases. As a matter of fact, I wrote a rather extensive Wheelchair Kamikaze blog piece on this several months ago:
DeleteCan Anti-HIV Drugs Stop MS?
Marc. Congratulations! You are doing a great job.
ReplyDeleteI would like to refer to a previous post on MRF who set its goal to have a therapeutic agent that repairs MS nervous system damage available to patients by 2019. I am just wondering how they wish to achieve this. Even if they have a working compound today, it seems unrealistic to me that they could complete clinical trials and start marketing in cuch a time frame. Am I wrong? Can you share more inof on this? Where do they stand now?
As for MitoQ. Be careful. If you translate the dosage used in mice into human, then you should take lots of pills a day, which is not only expensive, but killed one of the mice in the study.
Do you have any news on MSC-NP? Did you start the clinical trials? When I talked a researcher there he emphasized the immunmodulatory effects of this type of stem cells and he expected that patients with active lesions would most likely benefit. However, I am sure that Dr. Sadiq and his team is doing a great jov and I really wish you benefit from the treatment.
On a different note, are there any drugs used off-label or currently in clinical trials thyt you think worth looking into if you have PPMS?
Thanks and I hope one day we do not have to talk about these issues as we already have a cure.
Rob
Hi Rob, thanks for your comments. I'll try to address your issues as best I can.
DeleteAs for the MRF, I believe they have a candidate compound in sight, and may be announcing clinical trials very soon. If so, and the trials go well, it is conceivable that their research could be fast tracked, which would put the 2019 date in play. We can only hope…
Thanks for the tip on the MitoQ, as I am anticipating giving it a try. I'll be doing it under the guidance of the naturopathic doctor who works out of my neuro's clinic, so I won't be "freelancing". She'll make sure I don't take anywhere near a toxic dose…
As far as the stem cell trial is concerned, I don't believe that I will be one of the trial candidates, has my diseases so atypical that it shouldn't disqualify me from the inclusion criteria. However, I have high hopes for the success of the trial, based on my knowledge of the research being done and the quality of the researchers behind it. I know that Dr. Sadiq is quite anxious to expedite the research as much as possible, and bring these techniques to clinical practice as soon as possible. Again, we can only hope that the charter goal meets with great success.
As for potential treatments for PPMS, I just came across a study today out of Europe regarding the use of intrathecal injections of steroids in progressive MS patients. The results look quite impressive.
DeleteFor details, please click this link:
Steroids for progressive MS
Thank you, Marc. I hope MitoQ will help you.
DeleteAs for MRF, it is really good that they have a compound in their pipeline and they might start clinical trials soon. You are right, clinical trials can be completed in 5-6 years, so if we are lucky something good can happen by 2019. I just noticed that Phase 1 clinical trials will start with rHIgM22. It might be an interesting candidate.
As for MSC-NPs, did Dr Sadiq say anything about their hopes, whether it does more than immunmodulation and might do some repair? As far as I know MSCs help in immunmodlation and have an antiinflammatory effect. If these neural precursors could induce remyelination, that would be great.
The intrathecal application of steroids seems really promising as other cytotoxic drugs like Rituximab and Methotrexate also used intrathecally in clinical studies for PPMS. It seems that one specific feature of long-standing MS is that inflammatory cells accumulate in the central nervous system(CNS) compartment in the subarachnoid and perivascular spaces and may therefore be hard to reach via standard drug delivery through systemic administration. I just hope they will see these projects through, as otherwise most neurologists will not take the risk to apply these drugs or reccomend these treatments for patients. Thanks for the info.
Rob