MS Toolkit: The Patients' and Caregivers' Guide to Multiple Sclerosis

It is the nature of MS to be unpredictable. In some cases, an MSer has experienced only one or two exacerbations, or relapses as we call them. These are periods of increased disease activity during which various symptoms are manifested in usually obvious form. People with mild forms of this chronic disease are most fortunate. It's like having the measles. When all is said and done, an episode or two of disease activity and symptoms, then decades of symptom-free life.

Very large percentages of MSers are not so fortunate. I'll delve into the various classifications of MS, all based on the severity and pattern of symptoms and physical evidence, but suffice it to say, and I underscore this statement, the majority of people diagnosed with MS ultimately end up with some form of disability ranging from gait problems (difficulties walking which require at a minimum a cane for support) to outright needing a wheelchair; incontinence; severe and chronic fatigue; vision problems that can run the spectrum and might include blindness; cognitive thinking-related deficits (my personal favorite) and many others which I will speak of a bit later.

Historically it has been the nature of MS medical research to focus efforts on finding treatments for the relapsing/remitting form of MS (RRMS). This is the form that most MSers start out with, a time line of remissions of the disease evidenced by reduced or no symptoms followed by relapses, otherwise called exacerbations, where one or more symptoms flare to the foreground, sometimes being little more than a nuisance, other times leading to permanent or temporary severe disability and life-changing experiences. The alleged advantage of finding effective treatments for relapsing/remitting MS is that it is easier to quantitatively measure symptoms when they come in these packages of flares (relapses). In most cases you can specifically identify these periods and also identify the periods of remission. Therefore that is why pharmaceutical companies may frequently refer to rates of relapses such as 2.6 per year or 1.2 per year. If an MS patient has, say a three-year history of identifiable relapses and remissions, you can establish an historical relapse rate, place that person in clinical trials with drug agent X or placebo and then measure the relapse rate for a subsequent number of years.

Today some pharmaceutical companies tout clinical trials results where relapse rates were reduced by, say, 35 percent. What they don't go out of their way to tell you is that one, not all people who took the drug being tested had the same results; in fact fewer than half of people taking the drug may have experienced any benefit and two, since MS is unpredictable and changes from time to time, researchers can't really be certain that a small sample population's average reduction in relapses is due to the new drug or simply coincidental - that ever present difficulty with MS' unpredictability. Please do not mistake my words, their meaning or intentions; MSers should have access to the best available treatment regimens. That means considering the intake of drugs that may only benefit a minority of sufferers, so be it. MSers, though, should be fully aware of a drug's actual potential as measured by the pharmaceutical companies themselves.

This book is divided into three sections. Section One, which immediately follows, is my story, how MS evolved in my case, its progression and the life-changing circumstances for which it is responsible. The episodes are factual and represented from this patient's perspective and best recollection. Section Two offers an insightful and technical overview of MS, the biological disease. It covers MS' definition, symptoms, and classifications, some of the available treatments and various definitions of terms that are used throughout this volume. Be advised, I am not a medical practitioner or scientist of any sort. My background is in accounting, finance, and religious studies so the disclaimer that you shouldn't take anything I say as medical advice in any form is emphatic. If you do, and you later choose to sue me, well be forewarned - thanks to MS I don't own any material assets of note. Where I have extracted language from sources such as pharmaceutical companies and other independent parties I have so noted through footnotes, acknowledgments, and bibliography. Section Three offers up a question and answer session where I try to address the common questions that are inevitably faced both by MSers and their caregivers during their journeys. Section Four provides an information guide and recommendations regarding successful navigation of the maze of Social Security Disability.