by Anneke van der Zande
People who have just been diagnosed with MS have more questions than they dare to admit. And it never stops. 'Older' MS-patients still have questions. How will the disease develop in my particular case? Is it necessary to tell my employer that I have MS? Will I experience sexual problems, now or in the future? And is it wise to eat chocolate? A number of these questions is brought together in the Dutch booklet '101 Questions concerning MS'. The selected questions touch upon medical and social problems that MS-patients encounter. This booklet is meant for everyone who is personally or professionally interested in MS and is looking for straight answers.
Karin, aged 34, is a mother of two small children. After giving birth to her youngest daughter she started to suffer from ill health. The general practitioner referred Karin to the neurologist. After clinical examination, the neurologist noticed two neurological deviations. But other investigations such as the MRI-scan and the EMG, showed no deviation at all. After a long period of uncertainty, Karin still didn't know where her symptoms came from. The old symptoms disappeared, new symptoms took their place. Eventually Karin ran out of patience and returned to the neurologist. Now she tells: 'Recently the neurologist diagnosed the case as MS. I was so stupefied that I didn't understand a syllable he told me. The only thing I could think of was that I would be using a wheelchair shortly. Now I have come to realise that I have MS. And I have more questions than I can deal with".
Karin's case must look familiar to anyone who went through the same process. The diagnosis 'MS' often marks the end of a period of uncertainty. For some, it is almost a relief to know that there is really something wrong. But at the same time, the diagnosis gives rise to a host of new questions. It is the beginning of a new period of uncertainty for the new patients, their families and friends. Some of their questions can be readily answered with a simple 'yes' or 'no'. But others will remain open for a considerable period of time. And since the progress of the disease can be whimsical, new questions arise all the time.
The booklet '101 questions concerning MS' answers some of the most frequently asked questions. The '101' should not be taken literally, of course. The number of questions is actually much larger than the title modestly suggests. The questions in this volume are compiled by MS-patients. They are active members of the Dutch MS Projects Foundation. The foundation is also responsible for the publication of the book. The questions have been divided into fifteen chapters. Each chapter deals with a separate subject, such as the diagnosis of MS, clinical research methods, chronic fatigue, impaired vision, sexuality, work, pregnancy and heredity. Five well-known Dutch neurologists, specialists in the field of multiple sclerosis, have answered the questions. Each chapter starts with a personal case history, to which the reader can relate. The introductory chapter begins, for example, with Karin's case.
One of the larger chapters is concerned with how to deal with MS in daily life. Most people with MS show no apparent signs of illness, and have no serious symptoms. They try to live their life as normally as possible, despite the presence of minor disabilities such as fatigue or walking disorders. In this chapter we meet Jantien, who, two years after the diagnosis, has finally decided to make the best of her life. A life with MS. But she would like to know her limits. What can still be done, and what should better be left? For the ignorant reader, some of her questions seem rather trivial. Is the MS-patient allowed to eat chocolate? Should people with MS drink alcohol? And can amalgam fillings in teeth and molars worsen MS? Patients often feel embarrassed to bother a member of the medical profession with seemingly trivial concerns. But for most people with MS these questions are not trivial at all. The outcome determines whether they can have access to pleasures and services that others simply take for granted. The answers to these questions determine, in other words, the quality of life.
A special section of the book is devoted to the role of the general practitioner. The GP is the first caregiver a patient will turn to when he or she is not feeling well. The family doctor is then called upon to give information on the symptoms of the disease, and to provide the patient with a prognosis. This can make the relationship between GP and patient rather troublesome. MS-patients often expect their doctor to have detailed knowledge of all diseases, including their own. But GP's often find it difficult to live up to these expectations. On the subject of multiple sclerosis their knowledge is modest, to say the least.
Most GPs do not have much experience with MS. This is not surprising, given the fact that the average doctor only has one MS-patient in his practice, if any. The questions and answers that make up this section, try to clarify the role of the GP. What can the MS-patient realistically expect, and what is clearly beyond the competence or authority of the GP? One answer, for example, makes it crystal clear that MS-patients should not expect to receive much information from their family doctor on new medication and therapies. Most GPs are simply not aware of the latest developments in the field. Even neurologists are often ill-informed on this subject.
'101 questions concerning
MS' is not a book to be read in a single breath. It is a reference book.
The neurologists who contributed to the book, have tried to refrain from
technical terms as much as possible. The answers they give are easily understood
and unambiguous. This booklet, written in the Dutch language, is meant
for everyone who is personally or professionally interested in MS and is
looking for straight answers.
Copyright © 2000 Benecke NI