News from November 2013
Novartis Pharmaceuticals Canada Inc. (Novartis) announced today an investment of 1.2 million in Alberta to collaborate with the Alberta government to advance care and innovation in multiple sclerosis (MS). This investment by Novartis, for MS research, marks the first collaboration under a memorandum of understanding (MOU) between Novartis and the Alberta government intended to stimulate health research and innovation in the province of Alberta.
The 1.2-million Novartis investment will support research for the treatment of MS. The goal is to look at novel innovations, evaluation methods and care pathways and to translate these into practice to further the understanding of the disease and care of MS patients.
For more details, see the FULL ARTICLE.
by Eve Morgan
“What we see is that patients do not usually use alternative treatments for treating symptoms, but as a preventative and strengthening element.”
This was the statement from Lasse Skovgaard of the Danish Multiple Sclerosis Society following a Nordic survey conducted by researchers from the University of Copenhagen. The survey, completed in April this year, was the first to map the use of alternative treatment by MS patients; its study group consisted of 3,800 patients across Sweden, Norway, Denmark, Iceland, and Finland. The survey found that patients do not use alternative therapies to treat their symptoms but more to facilitate an easier path through life. The National Institutes of Health confirm that at least one third of MS patients in this country also take this route.
Omega-3 Fatty Acids – A Dietary Supplement
Omega-3 fatty acids are three fats: EPA, ALA and DHA. ALA comes from oils in plants such as flaxseed and the others can be found in the oils from fish such as salmon. There have been many studies into the effects of these fatty acids on the immune system but much less research regarding their use by MS patients. The small sample studies that have taken place have been less than conclusive. In Norway a team at Haukeland University Hospital in Bergen, under the leadership of Øivind Torkildsen, M.D., Ph.D., used a group of 92 patients in their study. They gave 42 of the patients omega-3 fatty acids, and the other 42 a placebo, daily. After a period of six months all of the patients were all also given interferon beta-1 three times per week for another 18 months. At the end of the study the research team stated that; “The results from this study did not show any beneficial effects of ω-3 [omega-3] fatty acid supplementation on disease activity in multiple sclerosis as a monotherapy or in combination with interferon beta.” These findings were partially contradicted by another study that observed the effects of Omega-3 fatty acids on a group of 312 patients over a two-year period. In those patients given 10 grams of fish oil per day the incidence of relapse and progression of disability were less than in those given a placebo, although not to a statistically significant level. The overall finding was that trends favored the group that received the fish oil. In their public access manuscript entitled “Complementary and alternative medicine for the treatment of multiple sclerosis” the National Institutes of Health advise that there is evidence to suggest the benefits of the neuroprotective and anti-inflammatory properties of Omega-3 fatty acids in MS therapy but that the treatment has not been vigorously investigated.
Aromatherapy to Ease the Pain
Many MS patients find it difficult to manage pain in conjunction with the symptoms of the decease. The chronic pain can often not be completely relieved so any means of helping to manage it can be a blessing. The essential oils of aromatherapy are said to have properties including relaxation, pain management, and the healing of wounds, as outlined by Licensed Prescriptions. They state that; “The practice of aromatherapy today centers on the use of essential oils which come from plants. The oils are extracted from the leaves or flowers by distillation. These oils are then used to benefit the health and well-being of the ‘whole person’ and can be used to help prevent and treat minor medical conditions as well as being an effective tool for relaxation and stress relief”. There has been scant research into the benefits of aromatherapy in relation to the treatment of pain from MS but oils such as roman chamomile, lavender, and white birch are said to have analgesic properties. The MS Trust in the United Kingdom states that “Aromatherapy will not cure the problem or get rid of the pain. However, it may help improve some of the effects of the pain such as sleep disturbance, joint and muscle mobility, whilst helping you to relax and feel better. Achieving one or more of these things can help people to cope better with pain on a day to day basis”.
The Future of the Alternatives
There is nothing to suggest that there will be any reduction in the numbers of MS patients looking towards alternative solutions to supplement traditional treatments. The National Institutes of Health report that the effectiveness of any therapy can take several years to investigate. They continue to suggest that over the coming five years there is likely to be increased investigation into alternative therapies to assist in informing patients and health care professionals.
by Roni Jenkins
I like to run…in mud…and under barbed wire. Basically, I love to run obstacle course races (OCR’s). I’ve done a few Spartan Races this year and was hopping to participate in my first Tough Mudder this summer in Vermont. It gives me such an amazing sense of pride and accomplishment—I don’t look for time, just wanted to prove to myself that I could do this. “I got this,” has become my saying with each racing challenge. I’m determined to use that mantra now with MS.
I took up running with more frequency a few years ago. I was always athletic when I was younger, but after having three children (a girl age 10, and two boys ages 8 and 6), time was precious and I really didn’t do any kind of exercise with any daily regularity. When I did start running a few years ago, 5 times a week between 3–5 miles each run and started experiencing some weird things, I naturally thought I had pulled something or had some typical injury that would occur with a new runner. What was I doing wrong? Why is my outer left thigh tingling all the time? Why didn’t my other runner friends have the same problem? They all said to me “it’s probably a pinched nerve or soreness. Use ice and Advil. It will go away soon enough.”
When I realized something wasn’t right, I pushed for my doctors to test me. I insisted on being tested for MS after reading online about the symptoms. Like everyone else, I was just hoping it was some virus and that I could take an antibiotic and make it go away. My primary care doctor didn’t think anything was wrong and instead had thought maybe I had Lyme disease. After all, I run in the woods all the time, but I knew I never had a bulls-eye rash or fever which are predominate symptoms of Lyme. My primary care doctor was sort of dismissive about my other symptoms: I would run and my head would clog up like I was on an airplane. I would feel off-balance; my gait was different than before. My left leg would tingle (not my right leg) and go numb, yet, it wasn’t the usual muscle ache from a workout. Something was wrong, I knew it. I decided to go to a neurologist on my own. He ran another set of blood tests.
My test results kept coming back negative and healthy. Healthy- really healthy. “Do you supplement? Your vitamin D levels are very good?”. I try to eat healthy, but definitely aren’t extreme about it. I like BBQ and pasta too much—white flour pasta—not the gluten free or whole-wheat kind. I take a daily multivitamin, try to eat well and just started juicing my fruits and veggies for smoothies. I’ve been on a Kale salad kick for months now, drink Almond Milk, take Red Algae supplements, Goji berries, Chia seeds, Manuka honey, you name it—all sorts of stuff that’s good for you. I didn’t know Vitamin D deficiency could be a marker of MS. Maybe I should have been a couch potato and eaten fried foods and something—anything—would have shown up as a marker sooner. I felt as if healthy was holding back my diagnosis. Someone get me some fried chicken and the remote. Honey Boo Boo is on TV.
I do yoga and stand-up paddle boarding, so my balance is probably better than most, but I knew during the balance tests the doctor gave me that it wasn’t what I could “normally” do. That’s just what other people can normally do. I’m glad I went with my gut and made the appointment with a terrific neurologist who specializes in MS and ran a gamut of tests- blood, MRI, Spinal Tap—the last one confirming the diagnosis of MS as a piece of the puzzle.
My fear is that someday I won’t be able to do the active things I love to again—skiing, running, yoga, swimming, playing with my kids. I trust that I will do my best to read every possible thing about MS (and not go crazy reading too much!), but educating myself on care, diet, exercise, knowing my limitations, and hopefully helping to play some part in finding a cure. I’m actively involved in fundraising for several non-profits and once I’m ready to tackle on an event to raise funds for MS, I’ll be doing it knowing someday I can not only help me, my children, but everyone else who has MS.
I got this. I just have to keep telling myself that.
Roni Jenkins was diagnosed on July 18, 2013 with RRMS. She is a mother of three young kids age 9 and under.
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