A web-blog (formerly known as Stu's Views and MS News), now published by MS Views and News, a patient advocacy organization. The information on this blog helps to Empower those affected by Multiple Sclerosis globally, with education, information, news and community resources.
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Friday, August 16, 2013
Vitamin D: A Wonder Drug in the Battle Against MS and Narcolepsy?
Optimizing your vitamin D levels may be your single greatest weapon in combating a wide range of illnesses including multiple sclerosis (MS), narcolepsy, rheumatoid arthritis, inflammatory bowel disease, type 1 diabetes, psoriasis, and even some cancers. Vitamin D is classified as an essential, fat-soluble vitamin. Physicians now recognize that it also functions as a hormone-like compound. Hormones are your body’s chemical messengers and are responsible regulating growth and development, metabolism, mood and other vital functions.
People living with these varied illnesses share a common factor. They are often either deficient or have less than optimal values of vitamin D. However, there is a chicken or egg type confusion in that physicians do not know if these individuals develop the illness because they are low in vitamin D or if their disorders are directly responsible for the low vitamin D levels. Or it may be a combination of these two facts.
Our 21st century lifestyles contribute to our less than optimal levels of vitamin D. We spend much less time outdoors than our parents and grandparents. Even when we do spend time outdoors, we often apply sunblock that prevents us from making adequate levels of vitamin D. Our other main source of vitamin D was from animal protein. However, modern agricultural practices limit animals’ exposure to direct sunlight and thus our food supply has lower levels of vitamin D.
Drowning in a sea of medical care
Early in the course of my illness, I experienced a rapidly worsening progression of my symptoms. Over the course of the first few years, I progressed from using a cane to using forearm crutches, and then onto to a rolling walker when out of the house. I was also working full-time at a stressful new job. Robynn and I quickly realized that our two-story house would no longer work for us and we began shopping for a ranch style home to make life easier for both of us.
Shortly after my MS diagnosis, I had received five intravenous infusions of steroids and numerous rounds of oral steroids, all within about 18 months. In addition, my neurologist prescribedintravenous immunoglobulin (IVIG) infusions and interferon beta 1a. Yet despite the best efforts of my physicians, my MS continued to progress without any remissions. My energy levels, along with my morale, sunk to rock bottom. My fatigue and sleep problems (yet to be diagnosed as narcolepsy) were running rampant. The combination of a marked reduction in physical activity and the appetite stimulating effects of the steroid treatments, contributed to a weight gain of over 70 pounds. And the cumulative side effects of all the medications had rapidly become as much of a medical concern as the disease itself.
“Please throw me a lifeline, now!”
My neurologist recommended that I try an immunosuppressive medication to combat my worsening multiple sclerosis and suggested we consider a wheelchair to help with my mobility. However, before I could try any further treatments, I came down with a severe case of pneumonia. After running every blood work panel imaginable, my primary care physician explained that my body was very weak and it was most probably due to repeated MS treatments. It was time for Robynn and me to review the overall treatment strategy and research our options.
I am longtime listener to the radio host, physician and author Dr. Ronald Hoffman, MD. He has always been in the forefront of medical research and has been a staunch advocate for patients to work with their physicians to achieve optimum vitamin D levels. We learned that there is a high correlation between MS and low levels of vitamin D.
After some research I asked my doctor to test my vitamin D level and he agreed. When the results were available, he simply stated, “You are fine.” I had to ask several times to get him to give me the actual number. My vitamin D blood test showed a level of 30 and my physician said it was fine. We told him about our research and he still said I was fine. We were shocked. Later, my neurologist said I was fine. Yet, all of the research showed that although I was not at risk for rickets, I was far from optimal. It seemed as if these physicians were scared of this humble vitamin, but were fine pushing potentially life altering MS treatments.
The sunshine vitamin to the rescue
We decided that I was going to begin high dose oral supplementation of Vitamin D and get my blood levels regularly checked. My goal was to get my level over 50, which is what is recommended by the Vitamin D Council. We resolved that I needed to regain my strength and stamina before even considering any additional treatments for my MS.
At twelve weeks into my vitamin D supplementation, our family went to a local park for the afternoon. My typical behavior became sitting on the park bench watching the kids play, but today something felt different. Quite impulsively pushing aside my walker, I grabbed my cane and began walking with only my cane. Even though I was not breaking any speed or distance records, I was walking alongside my children for the first time in two very long years.
I pushed myself through physical therapy rehabilitation and can remember completing my first walk around the block, then my first quarter mile. Through hard work and motivation from my great family, I was able to complete a one-mile walk within the first year of treatment.
My current physicians are very supportive of my vitamin D strategies. It took another five years to lose all the weight I had gained. Robynn and I also know that vitamin D is not a substitute or a cure-all for MS. In fact, my vision issues continue to progress while all my other symptoms are all still present. I still take vitamin D supplementation but I have increased my target level to 70, especially during the winter months when my levels decline very quickly. I have also noted that my mood, pain threshold and overall sense of well-being are elevated when my vitamin D levels are their highest.
We strongly urge all our readers to get their vitamin D levels checked by their physician. Perhaps this is why we all feel better after a vacation of fun in the sun? That’s my story and we’d really like to learn about yours!