Given a diagnosis of Primary Progressive Multiple Sclerosis, I realized I would have to take control of my own alternative therapy since there were no known drug therapies for this form of the disease. Only relapsing forms of MS have disease modifying drugs available for symptom management. My doctor ordered me a cane and gave me a hug. Such is the case for progressive MS patients. This chronic, autoimmune condition has no cure. One does not die from it, just suffers from many conditions as the body turns on itself in many different ways.
I was grateful that a label went along with the problems that led me to seek out advice: slowed gait, balance problems, questionable tiredness, fuzzy thinking, weakness in my right hand and arm, and lost vocabulary. I reached out to medical doctors, chiropractors, acupuncturists, and God. My yoga and meditation class became difficult, I cried a lot, and nothing made sense. Once recognizing my troubles were part of a chronic illness, I began on my quest to battle against MS with education. I immediately started researching on the web, checking out library books and talking to others I learned of with the disease. It became evident that my health was entirely in my hands.
FOOD = MEDICINE
I believed then and now that a person’s diet has a lot to do with one’s health. And nutrients in whole food are important to ideal health. I began paying attention to vitamins and iron when I became pregnant. I read about the stages of pregnancy and what nutrients were important. I wanted my baby to be as healthy as possible. So as an adult, I’ve always taken vitamins and began drinking green tea during pregnancy. Now my multivitamin focuses on my needs with an autoimmune disease.
I settled on a wholefood (as opposed to synthetic) multivitamin for women 50+, which includes CoQ10 (for peak mitochondrial efficiency), Vitamin D3 drops (the only supplement doctors recommend for MS), B12 drops (for myelin generation), K2 (to assist absorption of D3). I try to drink two cups of water when I first wake up and three cups daily of green tea. That can also be pu-erh or green tea for the antioxidants. I learned from a health practitioner to stay away from magnesium stearate used to bind pills but not as healthy. I added Boswellia, an Ayervedic herb for joint health, to my daily dose of supplements. It’s one of many useful Ayurvedic herbs I found useful for menopause in previous years. I had followed Ayurvedic herbs at the onset of peri-menopause. I knew women around the world weren’t popping pills like pharmaceuticals want American women to do. So much of the information I found came from natural health magazines. It’s also from magazines during my 40s that I heard of the many types of teas that come from sources other than Lipton. Soon after that, I learned about two more roots from TV host Montel Williams, who is also fighting MS. I first found the roots in capsules then in drops: Ashwagandha and Rhodiola for energy and vitality. I can feel a definite difference when I miss a dosage.
My second weapon became juicing; ‘drinking’ organic vegetables and fruits for their phytonutrients, (within ten minutes of juicing) in place of a meal or along with carbohydrates. I weighed the pros and cons of using a blender or a juicer with a nutritionist. I tried the blender first and chose the juicer. An increase in energy– by consuming large amounts of greens and their inherent vitamins– began showing up within days. I use mostly kale, spinach, celery, apples, cucumbers and parsley. But I found recipes for other drinks requiring beets and carrots, pears, chard, broccoli, cilantro and cactus. Two books, The MS Recovery Diet by Judith E. Bachrach and Ann D. Sawyer and The Wahls Protocol, by Terry Wahls, M.D., details how the writers changed their lifestyle and food choices to lessen the symptoms of MS. Both include gluten-free meals, dairy-free with the majority vegetables and fruits, oils, wild-caught fish and lean or no meats. The Wahls diet stresses nine cups of vegetables a day, organ meats and fermented foods for a healthy gut. I also make a point of eating liver weekly and fish twice a week. Dr. Wahls, also with MS, promotes specific exercises and other therapies in her daily routine. Functional Nutrition has recently been coined to encompass eating specific foods to achieve optimum health along with exercise. Magazine articles tout ‘superfoods’ as a new health focus but eating nuts, fruits and roots have been eaten for ages. Going non-dairy is hard. I chose to just go low-dairy. My weakness is eating real cheese.
My tiredness proved to be fatigue, unlike any other feeling. Imagine running a marathon, working a labor-intense job without a break or lunch, while having to haul a fifty-pound weight tied to your leg. Something like that. TCM roots from my acupuncturist boiled into a tea gave me some relief before I knew the cause. Fatigue hasn’t really let up in the afternoon and evenings. So I plan to accomplish most activities in the morning. In sharing my experiences with others in my MS support group, it was determined that we all pooped out between 2-4 pm every day.
Another major hurdle in the battle against MS can be finding community. The National MS Society supports support groups for people to meet, share stories, information, personal triumphs with others in the community who are also suffering at different stages of the disease. Along with monthly or bi-monthly meetings, yearly campaigns for fund raising walks help raise awareness and needed money for continued research. Not everyone faced with a chronic illness researches or reaches out to others to try new things outside of what the doctor prescribes. Some find energy to do amazing things while burdened with this disease. Many write blogs and go to conferences to learn and share information. Although there is an array of blogs on the Internet, I couldn’t always relate to the positive, uplifting stories. I felt more inadequate. Why were people grateful for their MS? When would I ever feel blessed because of MS? Books and websites of MS sufferers gave me insight into strategies to overcome the symptoms without drugs. Choosing to fight against the ravages of the disease quickly became my goal. I joined five MS sites and began communicating with real people around the nation. I found that most people shy away from people with a chronic condition, not knowing what to say without asking and learning. Then there are those who think they are a medical expert and talk at you about what should be done.
During the first month of being diagnosed, I started a journal to document everything I was eating, doing, thinking and practicing. Within a few months, I added a Gratitude Journal section to it: listing three things a day I was grateful for. I keep track of stationary bike use, new food and supplement information, pain and informational reading material.
The first walking aid I used was an AFO, a foot orthotic molded of plastic in an L-shape to keep the toes from turning under, causing trips and falls, known as drop foot. My right foot also began to drag. The new brace was a Godsend. I was mobile again, until I needed a cane. I could walk and my brace was hidden under my slacks. It was the first strategy dealing with spasticity and drop foot. I later learned that using a magnet bracelet around my ankle helps give a little more strength to my lagging leg. It now stays on.
Once my spasticity became painful, I had to focus on pain relief. Since neuropathic pain is a whole different pain, OTC pain medications don’t work. Acupuncture didn’t lessen any pain. The first prescription pain pill I tried was Gabapentin. It made me lightheaded, off-balance and feeling tipsy. I’m now taking Nortriptyline and much of the leg pain has subsided but my legs feel hard, cold and sensitive to touch. Aches come from the inside out. My description to others is that my thighs and legs feel like they’re bound in sandpaper that constantly moves against my skin. Ointments and creams don’t help either. To ease the constipation this drug brought along with it, I began taking Magnesium tablets. What works better is Miralax.
Much of the pulsating pain I feel in my legs and back comes from the lumbar spinal stenosis yet it is hard to separate the two chronic conditions. I often come into contact with other MS sufferers who are battling more than MS. In sharing the number of supplements and prescriptions we each use, some take over fifteen pills a day. As always, Google led me to an herb that weakens the pain of stenosis: Devil’s Claw. Two capsules of 480mg twice daily began soothing the aggravating pain within a day. I now take two pills twice daily.
After retirement due to my disability, depression set in. A psychologist working through the MS Society helped me understand why I was depressed. He explained how I was feeling due to the loss of career and life’s purpose, absent daily adult conversation and alienation. He gave me a plan and helped me realize I could still be productive and useful. Reading material on cognition and memory provided a means of keeping my brain sharp. Because all my troubles seemed to associate with my brain: thinking, making connections, memory, mood, and speech, I embraced the science of neuroplasticity: training and retraining your brain for peak performance. As I understand it, my brain needs exercise just like other muscles in my body. I began working on crossword puzzles, playing Scrabble alone or with others, and studying Spanish again. I also began playing all those free online brain games. It was hard at first, but after three years, I still push myself to do it at least five times a week. The games push my brain function when it’s hard. Being on a timer keeps me focused and quick on my fingers. AARP has several free brain games on their website as well as the original from PositScience website. I sometimes question if these exercises help and may never know. But I keep them as a part of my daily routine.
Recently, upon hearing from Montel Williams on TV, I’ve chosen to read and practice the clinically proven mind stretches and activities from the books by Dr. Norman Doidge, The Brain That Changes Itself. It took two readings to digest all the information. The book explains the brain’s neuroplasticity and how to harness it in the fight against MS. Many practices need the assistance of a physical theraphist, though. The website BrainHQ came about from the studies from PositScience and the work of Dr. Doidge. To begin with, the books supported my understanding that I could retrain my brain with several activities:
learn a new language: French
practice with online brain games to keep my mind sharp (first created by PositScience); continue crossword puzzles and card games
use visualization to imagine I’m using my weak hand for the muscles to strengthen (mental practice) what looks and feels like arthritis
His recent book, The Brain’s Way of Healing, offers hope with new and exciting techniques to retrain the brain against pain. Again the premise is that the brain uses neuroplasticity. Among the therapies to assist in reteaching the pain channels is the use of the Feldenkrais method of Awareness Through Movement. I would need to find a Physical Therapist who fully understands and embraces this practice.
It is not something I could do on my own. Another advance in neuroplasticity will be the availability of the PoNS unit, an artificial electrical stimulation device placed on the tongue. This device is part of the Omaha MS study that purports its use to turn off chronic inflammation. The idea of using low level laser light to unblock chronic inflammation and energize injured tissue has never left my thoughts. Not until 2002 did the FDA allow the use of LLL therapy in devices for cell repair. All of this information overwhelms me.
A VITAMIN; WHO KNEW?
In the spring of 2015, Medday Pharmaceuticals published clinical findings of a study using MD1003 results from a small study on high doses of the vitamin B7, or H, which brought impressive results for Progressive MS patients. The study placed pure pharma grade biotin in 100mg capsules, MD1003. I researched and thought about it over for a week, then I found a Facebook site of those willing to try and share results. I sent off for 25g bag of pure biotin powder, a scale and spoons. (Much stronger than the 500mcg capsules from the drugstore.) I was excited! The website has thousands of members from around the world. I learned so much the first two weeks. By two months, I no longer experienced ‘MS hugs’, spasms and night trips to the bathroom. After five months, I began taking 100mg/ day B1 to tackle increased spasticity. There are some concerns expressed by members of the Biotin For Progressive MS Facebook site, but for me, I’ll wait and see. The requirements are to take 300mg in powder form each day for two years. By then, we will have heard additional information.
In the Spring of 2016, news of the clinically studied Fasting-Mimicking Diet immediately had me following the diet of three days of low-caloric fasting. I chose to juice vegetables and eat fruit mostly during this time. Seven days follow with my regular Gluten Free diet. I intend to stay on this course for at least six months and keep abreast of further studies in the news.
I realize I can’t find out everything surrounding Progressive MS or that I will make positive choices on what new therapies to try, but choosing to take control of this chronic condition that has no cure is my only goal. Researching is my way of continued education. I once assumed stem cell therapy was the ultimate answer but after talking to someone who flew from California to Moscow for the five-week process, I’m not so excited. It entails chemotherapy, isolation, radiation and risk of infection while in a strange country alone. Many have done it but my family is truly against it. The procedure has finally come to the US but unavailable to the general public. After more than two years of Biotin, I began in 2017 taking Alpha-Lipoic-Acid 1200 mg/ day to also slow the progression.
I did find a chiropractor that gives me weekly LLL Therapy which has proven worth while with no full research as to why laser therapy would work. It has miraculously taken away nerve pain in my legs for weeks. I’ve been able to turn in bed, something I hadn’t done in ten years. After the 7th treatment with the high powered laser, I can now walk around my house without my cane; my right leg doesn’t drag but picks up!
What’s next for me? I will keep fighting the fight with new ideas on the horizon each year. Although most new drugs focus on relapsing forms of MS symptoms, there are researchers out there who haven’t forgotten about progressive multiple sclerosis sufferers. MS sufferers may be invisible to society, but we are not forgotten in the scientific and nutritional world. Our plight is not on the evening news but through the work of MS organizations, something positive has to win this fight.