The Unspeakable Bits; From a Life with MS
4/20 was long counterculture code for the use of marijuana. So on April 20, I put out a broad question about the medical use of marijuana (MMJ) for multiple sclerosis to the Life with MS Facebook page. I was surprised by the overwhelming response and support for the legal use of the substance.
I have on occasion thought about moving away from Connecticut, where I have lived for 30 years, and returning to my home state, Maryland.
But whenever I start reviewing all the things I love about Maryland, I remember all the things – the people, places and experiences – I would miss if I left my current home.
One of the aspects of my multiple sclerosis that I try hard not to think about is the physical damage the disease has done to my brain.
My brain had always been my best feature. I have not been blessed with great beauty or athletic prowess; I’m not musically gifted or good with my hands. But I could always rely on my brain: I’m smart, I’m funny and I can write a decent sentence when I have to.
I guess my fascination with the immune system started when I was a kid with bad asthma. I was always on steroids or some type of shot, and I didn’t understand why other kids were well when I wasn’t. Why was my immune system so over reactive compared to other kids? Doctors were heroes who made me feel better (even with all the shots), and that heroism was part of what drew me to medical school. I also loved learning about the brain – which is really “who we are.” This made the study of the immune system attacking the brain a perfect area for my career.Fast forward to today, 22 years into a career studying multiple sclerosis. One area I focus on is studying gender differences in MS. Women get MS three or four times as often as men, and when men do get MS it’s usually more progressive. Why? That’s the sexy part – sex differences I mean. To this end, we are pursuing whether differences in sex chromosomes or normally circulating levels of sex hormones impact disease susceptibility and disease progression. Another area is related to pregnancy. In the third trimester of pregnancy, women with MS see up to a 70 percent reduction in relapse rates. So, my research teams and I are currently testing pregnancy levels of the hormone estriol administered in a daily pill (hormone or placebo) to non-pregnant women with MS. In our two-year multi-center trial where all participants have relapsing-remitting MS and use Copaxone, the primary outcome measurement is frequency of relapses. In our new one-year trial, the primary outcome measurement is cognitive improvement; this trial includes women with relapsing remitting as well as secondary progressive MS who use any FDA-approved disease-modifying treatment. We’re testing estriol primarily because it’s unique to pregnancy, it’s safe, and because it helped improve lost cognitive function when administered to mice with experimental autoimmune encephalomyelitis (EAE: the “mouse form” of MS). Mice with EAE have cognitive effects similar to those in MS – demonstrated by their behavior and in lost nerve endings (called synapses) – and in mice with the MS model of disease, estriol treatment improves that behavior and rebuilds those nerve endings. Amazing!I hope you’re as excited as I am at how close this means we are to finding a treatment that is neuro-protective (serving to protect neurons/nerves from injury or degeneration) and could therefore have disease-halting capabilities, and maybe even some improvement effects. How novel that a naturally occurring, safe pregnancy hormone could prove to protect neurons from further damage, effectively stopping MS in its tracks! We’ll share results in 2014 and 2015. Today, thousands of people are gathered at our nation’s capital for the Rally for Medical Research – to raise awareness of the critical need to make funding for the National Institutes of Health (NIH) a priority. You don’t have to be there in person to show your support! My research would not be possible without funding from the NIH and the National MS Society. While the pharmaceutical industry is extremely important to bring new therapies to market, it’s hard for them or other investors to support research into products such as naturally occurring hormones or generic solutions because they won’t be as profitable. Academics like me are out there doing novel research toward new treatments not only to slow MS, but to stop and reverse it, through the pathway of NIH, Society and other generous donor funding and partnership. You can support this pathway, not just through donationsto the Society, but through activism. Ask your member of Congress to preserve funding for the NIH – it’s one email with a potentially HUGE response.If I had to give one piece of advice to people with MS, it would be: please keep faith that the treatments are coming – they’re getting better all the time! There are thousands of people like me who go to work every day to bring you better and more treatment options; comment below if you want to hear more about our sexy MS research.
I was thrilled to see that another oral therapy for relapsing forms of multiple sclerosis* has been approved by the FDA. With the arrival of Tecfidera (formerly "BG-12"), which should be available by prescription any time now, there are three oral therapies and a total of 10 disease-modifying treatments available in the U.S.
When I was diagnosed in 2001, there were just four therapies available. I take the fact that that number has more than doubled – and that options have expanded to include oral therapies in addition to the injectables – as a sign of the progress science has made in tackling this mysterious disease.
Having a new oral therapy on the market also makes me wonder, as I have several times in the past, whether I would be inclined to trade my daily injections for pills. I have been on the same therapy since I was diagnosed, and I have to say I’ve grown pretty attached to it.
Not that I like the big dents in my legs where the shots I give myself have degraded the underlying tissue. Nor am I a huge fan of the blue bruises on the undersides of my upper arms that mark the spots of those injection sites. And sometimes the shots I give myself in my belly just plain hurt. But I am thankful that I have never had a problem with my medication – and double triple thankful that the stuff, knock on wood, seems to be doing a great job at keeping my disease at bay.
Such a great job, in fact, that I don’t think I’d be inclined to switch to an oral therapy just for the convenience of it. But for all my fellow MSers whose therapies aren’t proving sufficient, and for all those newly diagnosed people who are sorting through their therapeutic options, I’m thrilled that this new pill’s available and that more are on the way.
You can read more about Tecfidera here and about the full array of MS therapies here.
*People with relapsing-remitting MS and people with secondary-progressive MS and progressive-relapsing MS who continue to have relapses
I’m excited to be reporting from the American Academy of Neurology (AAN) meeting in San Diego; it’s quite impressive to see large auditoriums overflowing with neurologists and other professionals attending presentations about emerging therapies in MS. Over the next few days I will share what I believe to be the most interesting MS research being presented here.One study I’m particularly intrigued by is a small trial of the blood pressure medicine, Amiloride, in 14 people with primary progressive MS. Amiloride had been shown previously to have neuroprotective properties – the study authors found that treatment resulted in a lessening of brain shrinkage associated with progressive MS. I am looking forward to seeing if this medication has similar effects in a larger study underway in the United Kingdom.
Another study of over 1000 people with MS is underway – designed to determine if Gilenya can slow down disability in primary-progressive MS, compared to placebo, after 3 to 5 years of treatment. I also find it encouraging that several other large studies like this for progressive MS are currently in planning or underway.
While there have been many successful new therapies introduced in the past two decades, most prove ineffective for people with progressive forms of MS. What excites me most about these studies is that they aim to bridge this gap and offer hope for real treatment options for people with progressive MS.
The first results of a phase III trial of peginterferon beta-1a in relapsing MS are also being presented. The study is testing a new formulation of Avonex that should stay in the body longer than the standard treatment. Successful trial results could mean that the frequency of dosing could be extended to as long as once every four weeks – reducing the frequency of injections.
I also attended presentations on various outcomes from extension trials of BG-12 and alemtuzimab. Researchers continue to add to our knowledge of the risks and benefits of these two meds currently being evaluated by the FDA for the treatment of relapsing MS. Studies are also underway on other emerging therapies for MS, including ocrelizumab and daclizumab HYP. Results will be shared on our research news as they become available.
More treatment options ultimately means that people with MS have a better chance of finding a therapy that fits their specific needs and lifestyle while reducing the frequency or severity of MS attacks or disease progression.
This is just a quick glimpse of some things that stood out for me so far – I will be sharing more, so stay tuned. Visit AAN’s website for brief summaries (abstracts) of the meeting.
I’ve been writing, and thinking, about self-advocacy a lot lately. I blogged last week about how simply becoming better informed about issues facing people with MS can be a first step toward advocating for oneself.
I wrote that I don’t have a lot of experience as a self-advocate when it comes to managing my life and my condition. But on further thought, I have recognized one big area in which advocating for myself – by making sure I schedule time to exercise every day – has paid off in a big way. I have placed physical activity at the top of my daily to-do list. Making sure everyone around me recognizes and respects that has taken a bit of effort over the years.
When I was diagnosed, in 2001, lingering doubts remained in some experts’ minds as to whether it was advisable, or safe, for people with MS to engage in physical exercise. It’s hard to believe nowadays, but people with MS were once cautioned to refrain from physical exertion for fear it would exacerbate their symptoms or even hasten the progress of their disease.
But my instincts – and my own neurologist – told me otherwise. I simply knew that running, riding my bike, taking a hike, swimming and (when eventually I discovered it, yoga) made me feel better, stronger, more in control. It might have been easier, in a way, to just sit around on my duff. But my body felt compelled to keep moving.
I was also inspired by the former Olympic skier Jimmy Heuga, who was diagnosed with MS in 1970, when he was 26 and at the peak of his professional skiing career. Though doctors recommended he stop skiing, he didn’t. Heuga, who died in 2010, was a pioneer in helping the general public and physicians understand the benefits of physical exercise to people with MS.
Of course, it’s now widely accepted that physical activity can be enormously helpful to those of us with MS. Appropriately selected exercise can build and maintain muscle strength, coordination and balance. For those whose symptoms are heat-sensitive, alternatives such as swimming or choosing cool environments to exercise in can make physical activity more comfortable.
The National MS Society recently posted on its website a link to a useful article about exercise and MS; aimed primarily at African Americans with MS, the information it offers – particularly its long and varied list of exercise options – is applicable to all of us. The article wisely reminds us to check in with our physicians before embarking on a new exercise routine, just to make sure it’s a good fit.
One fun mode of exercise (one that might not even seem like exercise at all!) is the video game Dance Dance Revolution (DDR), in which on-screen directions guide you through a complicated dance routine. The level of difficulty can be adjusted to accommodate any skill level (thank goodness for me; I’m terrible at DDR!). A studybeing conducted at The Ohio State University Wexner Medical Center is examining whether, for people with MS, DDR can lessen the cognitive and physical impacts of the disease.
According to a press release about the study, “In the ongoing trial, participants exercise using DDR three times a week for eight weeks. The patients’ cognitive functions are tested at the beginning and end of the trial, and functional and structural magnetic resonance imaging is used to detect brain circuitry changes.”The release quotes research team member Nora Fritz as saying, “DDR requires a lot of cognitive processing. Players must look at a screen and time their movements to the arrows on the screen…. Incorporating DDR into standard MS treatments has the potential to improve balance, walking, cognition and motivation.”Those potential benefits aside, when I’m doing DDR – or running, walking, riding, or doing downward-facing dog – I try to concentrate on how good it feels to move and how much fun life can be. Breathing hard, sweating, and using my muscles are things I do for myself to keep my body and mind healthy. They are also things I have learned never to take for granted. Nor do I take for granted the vital role exercise plays in managing my MS. That’s why I insist on taking time to get out and get moving every day – even when I have to assert that need as a top priority. Learn more about exercise and MS at the National MS Society’s Exercise page.