Marc Discusses Life With Primary Progressive MS
Welcome back. If you are just tuning in, we have been lucky enough to interview some prominent MS bloggers who live with Primary Progressive Multiple Sclerosis. This week, Marc Stecker has joined us. Begin reading with Part One. Our interview continues below with Part Two.
Switching gears. There are no proven effective treatments for PPMS, could you give us a brief run-down of the treatments you have tried over the years? Have any of them proven effective for you over time?
I can give you a rundown of the treatments I've tried over the years, but it won't be brief. Let's see, there was Rebif, IV steroids, CellCept, Tysabri, Rituxan, plasmapheresis, intrathecal methotrexate, the liberation procedure, natural and homeopathic remedies, dietary changes, intense physical therapy, and even anti-evil eye ornaments. As a friend of mine once said, at this point I'd be willing to crawl up the ass of a fat man if there was even the slightest chance it might help beat this disease.
At the moment of my diagnosis, I swore that I would fight this thing with everything I had. My MS neurologist is known as one of the more aggressive doctors out there, and I'm fine with that. Even though there are risks involved with all the treatments I've tried, at least there was the possibility, however remote, of some upside return. I know with some certainty where doing nothing will lead, and it's not a pretty place. If I'm going to go down, it will be with all guns blazing, both fists bloodied, and a steady stream of curses leaving my lips.
Unfortunately, none of the therapies I've tried have done a lick in beating back my disease. Actually, a 10-day course of IV Solu-Medrol did provide some incredible but temporary improvements. It also led to my developing avascular necrosis, which is a rare side effect of steroid use, and is a condition in which the blood vessels that service the bones in the major joints die, taking down those joints with them. I have the condition in both shoulders and both hips, and it's resulted in my having to live with the equivalent of two broken hips. It's a progressive condition, and at times the pain it has caused me is literally beyond description. So, that 10-day course of steroids is the one treatment option I wish I hadn't tried.
As for the CCSVI liberation procedure, mine was a "successful failure." We discovered that I do have a significant blockage in my right internal jugular vein, but at present there is no way to get it open. Unlike most other people with vascular blockages, my blockage is caused by a muscle external to the vein pinching it closed. Ballooning or even stenting will not clear up this blockage, and it seems that my only option may be traditional open neck surgery. Several of the CCSVI experts have weighed in, though, saying that although my blockage is rather severe, it's not causing the turbulent black flow of blood back into the CNS that is the hallmark of CCSVI. That's one of the big misunderstandings about the CCSVI hypothesis. Itʼs not the actual blockages that are the problem, but the disruption in blood flow caused by those blockages. Not every blockage results in the severe reversal in blood flow that the CCSVI theory proposes is behind the damage done to the CNS.
I'm currently looking for a good witch doctor, so if any of your readers know of one, I'd appreciate their chiming in. Nothing that would involve any animal sacrifices, though. I'm too enamored of our furry friends...
Where can MS patients and their family members go for reliable information and support regarding CCSVI? Do any of these groups or websites encourage patients to find their own Interventional Radiologists to conduct assessment and treatment of CCSVI?
There's a whole lot of misinformation regarding CCSVI out there on the Internet, most of it unintentional but rather the product of overzealous patients brimming with hope for possibly the first time since their diagnosis. A great site for unbiased CCSVI info is CCSVI.org, the website of the CCSVI Alliance. Of course, there's Wheelchair Kamikaze, where I try to give as comprehensive and balanced a point of view as possible. Patients really need to do their homework on this, as increasingly we are seeing more and more outlets offering the liberation procedure for some significant amounts of money, and very little is known about the experience of the doctors offering the treatments, nor the outcomes of the patients who have undergone the procedure at their hands. There's been an almost universal agreement among the interventional radiologists that are currently working on liberation procedure that the learning curve in doing it is quite steep, and that there is a great need for the identification of the best practices and procedures to follow. The liberation procedure is currently a work in progress, as more and more is learned about the technicalities of the procedure and the science of the CCSVI hypothesis, almost on a daily basis.
It's becoming increasingly clear that the liberation procedure is not a magic bullet for most of the patients who undergo it. The problem of restenosis is quite high, and we're hearing more and more stories of problems with stents that have been implanted in patients' jugular veins. It's becoming somewhat apparent that more veins than were originally thought are probably involved in the condition, some of which cannot be opened using present techniques and technology. A medical tourism industry is quickly developing around CCSVI and the liberation procedure, and I urge extreme caution among those patients considering traveling thousands of miles and spending thousands of dollars to get the treatment done. Aftercare is very important, and often local doctors are unwilling to treat the complications that arise from procedures done in far-off lands. Furthermore, because of the high rate of restenosis, and problems with implanted stents, many patients are often experiencing an initial benefit from the procedure, but then slipping back to their pre-procedure condition. This is not something you'd want to have happen after traveling thousands of miles and spending tens of thousands of dollars, but that's just the predicament quite a few patients are finding themselves in.
Having said all of that, I'm still a big proponent of CCSVI. I do believe that the theory will change the way MS is studied and treated, but I don't think it will be THE answer for all MS patients. It may be the whole enchilada for some patients, for others only a partial solution, and for others still it may play no role in their disease at all. We are in an age of discovery, and at this stage the unknowns greatly outnumber the knowns in regards to CCSVI.
[Marc has posted a comprehensive round-up of CCSVI Info on his blog. If you are interested in the topic, this is a must read.]
Too often unknowns do outnumber the knowns in life. With hindsight being 20-20, is there anything you would have done differently over the years, knowing then what you know now?
Well, there was that night that I walked across the frozen Charles River back in my college days, and I do wish I hadn't hit a certain person in the fist with my eye. As far as MS treatments go, I certainly wouldn't have done that 10-day course of IV Solu-Medrol if I knew that it was going to result in my getting avascular necrosis. Definitely not worth it, but there's no going back...
What recommendations would you give to someone who is earlier on the path of their journey with MS? Any words of advice or comfort?
My first bit of advice would be to educate themselves as much as is humanly possible, and to learn to be their own advocate. Choose your MS neurologist wisely, as this is a person you'll likely be entering into a long-term relationship with. The doctor-patient relationship shouldn't be a dictatorship, but more of a mentorship. You've got to find somebody you're comfortable being a partner with.
I know it's difficult, but you must at least attempt to try to keep an even keel when looking through Internet blogs and forums, as I've seen many patients get their hopes up over one treatment or another, only to have them dashed later on.
There is much to be optimistic about for the newly diagnosed MS patient. CCSVI is certainly promising, as are stem cell therapies now in the experimental stages. Several stem cell studies on MS patients are gearing up to get started this year. There's also much research being done in the areas of neuroprotection and neuroregeneration, which are really the holy grails of MS research. Despite their drawbacks, the current MS therapies do increase the quality of life of many of the patients taking them, but again, it's important to do your research and choose wisely.
I guess most of all, the best advice I can give would be to try to continue to live your life to the fullest measure possible. It's easy to say, but try not to get too freaked out over the fact that you been diagnosed with MS. Life does go on, and the world doesn't stop spinning, despite the fact that you may sometimes wish it would. Live in the moment, and try to make the most of each and every day. You'll never be happy about having MS, but you can be happy in spite of it. Happiness is the result of a million choices made each and every day, and just as the patient needs to take responsibility for their own education about the disease, they also need to take responsibility for their own sense of happiness, contentment, and satisfaction.
Be kind to yourself, try not to worry too much about the future. The only thing you have any control over is yourself, and the moment you are presently living. I'm not a "rainbows and unicorns" kind of guy, and the phrase "I have MS, but MS doesn't have me" makes me want to puke. MS certainly does have me, right by my naughty bits, and the disease sucks as much as anything can suck. But you can acknowledge all of that, and resolve to live as well as you possibly can, given whatever circumstances you find yourself in. As they say, living well is the best revenge, and by not succumbing to the depths that MS may try to drag you down into, you're raising a great big middle finger right up into the face of the disease. And that's a good thing.
Thank you, Marc. I really appreciate that you have chosen to share your story and thoughts with us. We are better for it. And thatʼs a good thing.