My MS diagnosis a few months ago was truly a surprise, even though I’d been seeing neurologists on and off for six years! We’d been monitoring a few small brain lesions and some nagging symptoms — tingling, numbness, falls. I’d had no fewer than five neurologists tell me there was no way that I had MS; that all my symptoms were a result of life-long chronic low B12. I was instructed to keep up my supplements, shots, nasal spray, patches — I’ve tried them all. But nothing seemed to budge my low B12 levels.
So, when I landed in the hospital with a confusing array of dramatic symptoms — unstoppable vomiting, unable to keep down any liquids, dizziness, fainting, a bizarre heaviness and unresponsiveness to the legs, memory losses, a drooping mouth and eye — I was thinking flu or stroke, not a neurological issue. I was lucky that an emergency room doctor took one look at me and decided what was going on wasn’t stomach related or a virus, but neurological. They booked me into the hospital, got me a neurologist visit, and scheduled three more magnetic resonance imaging (MRI) scans. The MRIs showed the neural lesions had spread and grown — from five to 16 in a year — and the symptoms, although not all typical of MS, were certainly in the ballpark. Now I had to learn fast — the definition of MS, what a flare was, what the treatments were in the immediate and long-term. What was I going to do that day to get better? The answer was a combination of physical and occupational therapy, medications, and education.
Managing the surprise — and looking for information
So how could this have been such a surprise? It turns out most MS patients — most, not just a few —take years to get a firm diagnosis of MS. Getting a diagnosis often means years of MRIs, sometimes spinal tests, unpleasant tests that involve getting shocked and stuck with needles, eye exams. There’s not just one easy five-minute test they can give us, at least not yet. Frustrating, right? And the treatments? It’s a confusing mass of therapies, medications, and procedures — some that have been around for years and others that are so new their side effects and dangers aren’t yet fully understood. So, my first coping mechanism in the face of my surprise — and let’s face it, I had a lot of time on my hands, as I was stuck in bed for a whole month unable to do much moving around — was to read.
I read about 15 books on MS in a few weeks. I have a biology degree (I was pre-med, before I became a tech writer and then a poet) so I was frustrated about the lack of good information out there for new diagnosis or even good comprehensive books about treatments and disease management. If you search Amazon or Google for “MS books,” you will find at least 100 books about healing through fad diets and very few actual books offering solid information. Very, very few were published in the last seven years, and MS treatment has changed quite in that time.
I am including a list here of a few books I did find helpful. (A warning: Some of these reads are depressing, giving scenarios of advanced MS and its complications, which might be overwhelming for someone who’s just been diagnosed.)
1.Murray, J., Saunders, C., & Holland, N. (2012). Multiple Sclerosis: A Guide for the Newly Diagnosed (Fourth Edition). New York: Demos Health.
Probably the best comprehensive explanation for what was going on with my body, how it gets diagnosed, and practical concerns like Americans with Disabilities Act considerations and financial planning.
2.Kalb, R. (2011). Multiple Sclerosis: The Questions You Have the Answers You Need. New York: Demos Health.
This one is a little bit like Everything you wanted to know about sex but were afraid to ask, but for MS. Some of the questions touch on sensitive subjects that I found depressing — marriage abuse issues, or bladder issues in late MS. Still a useful resource, but maybe don’t read the whole thing in one sitting.
3.Bowling, A. (2014). Optimal Health with Multiple Sclerosis: A Guide to Integrating Lifestyle, Alternative, and Conventional Medicine. New York: Demos Health.
Maybe not everyone’s cup of tea, but I loved this brief rundown of all kinds of research on MS and the effectiveness of various types of treatment, from traditional to holistic, from supplements to worms to the newest biologics. Caffeine? Bee stings (those studies have killed people, so…)? Reflexology? Vitamins? Herbs? See which things might be worth your time exploring based on actual science instead of some fad diet book, and which things … might not. Spoiler alert: A lot of things do not work long-term. But it’s good to know what might help.
4.Weiner, H. (2005). Curing MS: How Science is Solving the Mystery of Multiple Sclerosis. New York: Three Rivers Press.
This one is for the extra curious — probably not fun reading for most laypeople — about one scientist’s investigation into MS cures and research.
5.Costello, K., Thrower, B., & Giesser, B. (2015). Navigating Life with Multiple Sclerosis. New York: Oxford University Press.
A little basic, but still useful.
I’m afraid the reality is that the science and treatments are still developing, so good information is more likely to appear online in research papers or medical journals than in an easy-to-digest book form. It’s why you’ll probably find yourself returning to websites like this one — with doctors, patients, and other resources — more often than books.
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Jeannine Hall Gailey served as Redmond, Washington’s second Poet Laureate and is the author of five books of poetry, including her latest, Field Guide to the End of the World, which won the Moon City Press Book Prize and the SFPA’s Elgin Award. She studied biology for her Bachelor’s degree and then got her graduate degrees in English and Creative Writing. Her web site is www.webbish6.com and you can follow her on Twitter @webbish6.