On the Fringes of MS

The number of Americans living with some form of chronic illness is estimated to be around 133 million. They run a wide spectrum, from obesity to genetic abnormalities to cancer. Many can be managed through a combination of medicine and lifestyle modifications, but they’re always there, affecting the lives of not only those who have them but those in the lives of those who have them. I’m one of those people, because seven years ago, my wife was diagnosed with multiple sclerosis.

After a bout of facial tingling and blurred vision led to an MRI and a spinal tap, she was given the news while waiting in an ophthalmologist’s office. She did what any of us would do when given such devastating information: she cried and wondered if her life was going to be a steady, downhill slide into oblivion. Then, like the 400,000 Americans with MS, she took a deep breath, wiped away the tears and got on with her life. Part of which was, about a year later, meeting me. She told me on our first date, saying something along the lines of “I have MS. The door is over there.” I didn’t go through it.

Developing new treatments for MS is challenging because nobody is quite sure what causes it or triggers it. So finding the right medications to halt its progression, reverse its effects and possibly even cure it is like baking a cake without having a recipe, just a box of ingredients. You end up mixing things together by trial and error, hoping that with enough experimentation and research, you’ll come out with a delicious dessert, as opposed to a disgusting mess. The current regimen of MS treatments is fairly new, with the first disease modifying drug, Betaseron, only coming on the market in 1993. While the drugs don’t heal the damage, only reduce the instance of relapse, they are doing MS patients a world of good, and new drugs are being researched that will be even more powerful and safe.

However, we live in a society where some see medication as corporate poison, and trained medical experts as Big Pharma stooges. Add that to the difficulty in treating MS, its nature as a chronic illness that takes a relapsing/remitting form in most patients and the lack of consensus about its cause and you have the making of a frenzy of fringe therapies and miracle cures, which can be yours for the right price. Some are currently being studied and might have merit, but most are simply the domain of hucksters lining up to steal money from people desperate for answers and better health.

To her credit, my wife has steered clear of the quackery, preferring to treat her MS with a combination of prescribed medication, complimentary medicine, including yoga, massage and acupuncture; regular exercise and following the advice of her neurologist. But not all have chosen this path. Here are a few of the more left-field MS “treatments” out there, and what effect, if any, they might have on the course of the illness (and you can find more fringe “cures” at Quackwatch’s page on MS.)

CCSVI Treatment
Also known as “liberation therapy,” this is a surgical procedure that purports to treat a recently-discovered condition called chronic cerebrospinal venous insufficiency, or CCSVI. Theorized by Italian vascular surgeon Paolo Zamboni (whose wife also has MS), CCSVI is thought to narrow veins in the neck, causing impeded blood drainage in the central nervous system, which leads to increased iron deposits in the brain and autoimmune system damage. Zamboni found a high percentage of MS patients with these narrow veins and developed a surgical procedure similar to angioplasty, which widens the veins and allows blood to flow normally, reversing the effects of both CCSVI and MS.

The advent of CCSVI surgery was an earthshaking event in the MS community, hailed by its supporters as a miracle cure that changed lives and freed people from the disease. Patients with more advanced forms of the illness rushed to Italy to undergo Dr. Zamboni’s venous angioplasty procedure, and numerous organizations sprang up to advocate for the surgery. Patients who underwent it declared that their symptoms were reduced, or had gone away altogether. It seemed to be too good to be true.

And so it is. CCSVI surgery is totally unproven, untested and extremely dangerous. Neither US nor Canadian insurance cover it, and some hospitals in the US have gone so far as to ban it until further research is carried out. Its long-term effects aren’t known, and its short term efficacy is unclear, at best. Indeed, the majority of MS researchers are not even sure CCSVI is real. To quote the excellently sourced Wikipedia article on the procedure:

Within the medical community, both the procedure and CCSVI itself have been met with skepticism. The United States Food and Drug Administration states that it is not clear if CCSVI exists and that these treatments may cause more harm. Zamboni’s first published research was neither blinded nor did it have a comparison group. Research on CCSVI has been fast tracked but researchers have been unable to confirm whether CCSVI has a role in causing MS. The “liberation procedure” has been criticized for possibly resulting in serious complications and deaths while its benefits have not been proven. This has raised serious objections to the hypothesis of CCSVI originating multiple sclerosis. Additional research efforts investigating the CCSVI hypothesis are underway.

The patients and families dealing with MS want new and better treatments as soon as they’re available. And people want CCSVI surgery to be the answer they’re looking for. Indeed, further testing is being performed, but the results aren’t encouraging so far. While it’s obviously a personal choice to undergo the procedure, having risky, unproven and expensive surgery to solve a medical issue that might not even exist is not the reality one should be rushing into lightly.

The MS Diet
Some nutritionists believe that MS is a condition that can be controlled extensively by diet, despite very little evidence confirming this. “MS diets” abound, usually relying on low-fat foods and high amounts of fatty acids. Others strongly advocate for forms of the paleo diet or going gluten-free. The MS Society simply recommends eating a well-balanced diet, exercising and watching one’s weight, which is advice that is probably good for just about everyone.

Some research suggests that a gluten-free diet might help ease certain MS symptoms, but this is far from proven. A quick search of “gluten free ms” brings up a host of people who declared themselves “cured” of MS by eliminating the evil protein and all its host products. Most of these sites end up revolving around a naturopath hocking their own book or program, so proceed at your own risk. Rarely are these diets are actually prescribed by neurologists, and no ethical doctor would rather sell you a book than cure your illness.

Bee Venom Therapy
The use of bee stings or bee venom therapy, also known as apitherapy, has been around for over a century, and posited to be a treatment for everything from arthritis to dissolving scar tissue. But its chief application seems to be as a “natural” therapy for MS. As with most radical, nature-based “treatments”, no doctor will prescribe it, the research on it is inconclusive, or outright damning, and yet some people swear by its efficacy, declaring themselves cured with no evidence beyond their own word to support their claims.

Steven Novella wrote an excellent piece on bee venom therapy and MS, and it’s a pretty thorough debunking of the theory behind the practice. The article was written in 2008, and since then, additional studies have confirmed with research what should be obvious by common sense: being stung by a bunch of bees is not the answer for a mysterious and elusive neurological disorder.

“I Cured My MS, and You Can Too!”
Taking a step beyond the naturopaths and doctors who claim to have developed miracle cures for MS are the patients who claim to have developed them on their own. Websites like nomorems.com (I didn’t include a link since my computer indicated there was a virus on the website), youcanbeatms.com, hopeandhealingbook.com and others are written firsthand by “MS survivors” who declare that they were at the mercy of a vicious disease that had robbed them of the ability to function in normal society. Then they got up, got to work and developed a program that rid them of their symptoms through radical means. They changed their diets, cleansed their bodies and became closer to God. Now they feel great, are symptom free and ready to share their hard-won knowledge with the world.

Then they hit you with the sales pitch. Buy their book, buy their diet, buy their “program”, buy their cure. All of which will be outrageously priced and possibly dangerous. Many “cures” involve long-debunked pseudoscience like colon cleansing, vitamin megadosing, removal of dental fillings, treating the elusive “leaky gut syndrome” or detoxing. Some actively encourage patients to stop taking their medication, something nobody with any illness should do without the supervision of an actual doctor. And they are all totally unprovable, based on wishful thinking and bad science.

I’m not qualified to say whether these people have cured their MS, or if they’re in a remission phase, were misdiagnosed, or are simply lying. I’m not accusing anyone of anything. But nothing in any scientifically proper research says that what they claim to be doing is actually helping them, or will help anyone else. And nobody who developed such a cure would hold their fellow patients hostage for money rather than give them this invaluable information. So until the science says otherwise, or they dispense their hard-won knowledge for free, patients and families dealing with this difficult and unpredictable illness are right to be skeptical of anyone who says they’ve cured anyone’s MS.

The path we found isn’t easy. But unlike the miracle cures and unproven therapies out there, it works.