MS Diagnosis, Now What?

April 7, 2007 by  

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By Linda Boughman

Multiple Sclerosis (MS), now that is an interesting word. It means, “many scars”, hardened patches of scar tissue. Hardened patches found in the brain and on the spinal chord. This sounds serious doesn’t it? It is serious. It results in a disease affecting the central nervous system. The brain, spinal chord and nerve bundles are affected causing abnormal nerve transmission. An affected central nervous system experiences something like the crossing of electrical wires causing reception, interpretation and transmission of the nerve impulses to be disrupted. Disrupted connections occur in various places along the lengthy nerve bundles as a result of damaged myelin sheaths, the wrapping found around nerve fibers that acts likes the insulation found around electrical wires that keep them from sparking. The disruption in transmission results in miscommunication among groups of nerve cells resulting in unfamiliar and unpredictable physical responses, reactions and sensations in the body.

A person who is first experiencing MS symptoms is constantly nagged by questions like: What is this numbness? What is this tingle? What is wrong with my eye? Why do I feel weak? What is wrong with my body? Responses to the diagnosis can be mind jolting or even a relief. When the diagnosis is not the feared terminal or life- threatening disease expected the seriousness of the actual diagnosis of MS might be minimized. “It is not the best news to hear, but it’s not the worst and there is treatment that help; the tests show it is MS” the doctor might say. Relief may set in then if one feared a brain tumor or some other perceived terminal condition. Treatment is available and death is not imminent. Good words to hear! We may know of people who have MS and they lived with it for years. When the diagnosis is not what was feared, it is possible to dismiss words that should be heard.

Pamphlets with information about the disease are helpful to get an overview of MS. One should gather all the information they can about the disease, its treatment and how it affects both the patient and those around them—family, friends, co-workers. Counselors are a valuable resource to anyone just diagnosed with MS or any incurable disease. A counselor is able to help the person and family members understand the disease, answer any questions about treatment and guide the patient and family in developing plans and goals for living with the disease. The pamphlets given to the newly diagnosed are very helpful, but the advice of talking to a counselor is something that should not be shrugged off. Don’t make the mistake of thinking that just because the diagnosis is not life threatening, that living with MS will not result in modification of one’s life. Understanding what is happening inside and outside the body makes a big difference in adjusting to MS by all concerned.

The disruption of the flow between nerve transmission and miscommunication between mind and body in MS leads to such outward reactions as increased muscle tension causing spasms in the legs, back and/or arms and walking irregularities. Less obvious reactions are changes in thinking and memory.

Walking irregularities can include a limp, dragging of one leg, stiffness, partial or complete paralysis, fatigued leg, uneven spacing of steps and sudden collapse of strength in the leg. The irregular walking pattern is due to faulty muscle action, a condition known as ataxia, where the muscles are not working together at the same time. Counseling will guide to resources such as physiotherapy, treatment using various prescription drugs and supplements, massage therapy and manipulative aids such as canes, wheelchairs, etc. Counseling will help to understand the various treatments, what is involved and what to expect.

Changes in thinking and memory involve the brain, thought processing, in other words, cognitive functioning. Problems in cognitive functioning in MS can take the form of decreased attention span due to mental fatigue, decreased speed of processing information presented to the brain, shortened memory length, slower with problem solving skills, slower with figuring distance of objects, and perception and language fluency.

Resources to help manage the learning of new and different ways of dealing with any problem area include, Neuropsychologists who understand the relationship between brain functioning and behavior and can recommend treatment programs; Occupational therapists to help learn compensatory strategies for home and work and Speech therapists to assess communication problems and assist in speech and swallowing, written and verbal communication. The impact of cognitive changes can be stressful leading into the area of unexpected emotions.

Once the diagnosis of MS has been processed by the brain and accepted by those involved, hearing that diagnosis can have different reactions from the family members as well as the one with the MS. Regardless of the initial reaction by all, emotions of relief, denial, shock and uncertainty, frustration, anxiety, guilt, depression and anger can, and most likely will, surface at some time. How those socially affected by the diagnosis will react to this, of course, depends upon their personality and learned coping skills, flexibility of future plans for themselves as it relates to the affected person, and their ability to implement changes in their life. Knowing that all family members will have to deal with strong and difficult emotions will let everyone be better prepared to deal with and handle the situation. Early counseling can help avoid later negative reactions and attitude in general.

The reality is MS and its symptoms won’t go away, however, the effects can be managed. Physical and emotional reactions can be better understood with information and an outlet for expressing concerns. Counseling is that outlet. Those closest to the person diagnosed with MS will be affected by the added stresses and frustrations that MS causes. The newly diagnosed with MS need to understand that MS will impact them, along with their support system of family and friends. The impact can be managed before any serious family crisis occurs. Partners and children are top priority and often, without early counseling, negative, confusing, or overblown emotions occur, sometimes severely affecting family relationships. Early counseling on how to live with MS is important for all concerned. Resources of where and when to seek outside emotional and/or physical support can be supplied to give the needed ‘time out’ periods for each member of the family.

All reactions to the diagnosis of MS will be guided by emotions and attitude; these two go hand in hand. While personality will play a role in reactions, often times these two factors will play off each other, one guiding the other. There are two directions to go physically and emotionally after hearing the diagnosis: a determined, non-defeat attitude or a give-in, there is no cure and nothing I can do attitude. There IS something one can do– join a MS support group, research the disease, ask questions and keep up with the current research.

Living a fulfilling life with MS can happen. The plans, goals, dreams and aspirations a person has don’t need to be thrown away, but altered to make them compatible with living with MS. Adjustment is the key.

Linda is now a retired speech therapist. She was diagnosed with MS in 1988. She , husband and daughter now live in New Zealand. Linda focuses on her writing interest and writes short stories, poetry, and articles as a free lance writer.

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NOTE: The contents in this blog are for informational purposes only, and should not be construed as medical advice, diagnosis, treatment or a substitute for professional care. Always seek the advice of your physician or other qualified health professional before making changes to any existing treatment or program. Some of the information presented in this blog may already be out of date.

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