How FINDcures Can Help
FINDcures specializes in providing help in areas that other foundations often miss or leave unaddressed. When a family member is diagnosed with Multiple Sclerosis or ALS, a cascade of questions and concerns materialize that can easily overwhelm a family. Most often the issues of on-going therapy and education on how family members can be an effective caregivers will be need to be addressed.
Beyond the issues of therapy and caregiver education there are other adjustments that need to be considered. Specific concerns, that most often arise in a progression of unanswered questions, can have an overwhelming impact on a family’s sense of security and self-worth. FINDcures has developed a service model (shown at right) called the “Perimeter of Hope” which is designed to provide solutions and answers to the myriad questions that arise when a neurological diagnosis occurs.
The most common questions that come up are these:
- Why is this happening? What caused this? How difficult is this going to be? How is this going to impact my family? Who can I turn to when I start to feel overwhelmed? How do I deal with all of the emotions I’m feeling? (Mental Health & Well-Being Services)
- How will I be able to provide for my family in the future? (Financial Planning & Retirement Services)
- How can I protect my assets so that they will be available as a resource for my family when I am unable to do so? (Legal Assistance & Estate Planning Services)
- If our family needs to relocate to receive better care or to reduce expenses who can I turn to for help? (Housing, Relocation & Real Estate Services)
- Will I be able to help with my children’s education expenses in the future? (Education Planning & Tuition Assistance)
- When will they find a cure? What health steps can we take in the meantime? (Medical Research & Information Services)
When an impacted individual or family is faced with making these decisions on their own and without help from qualified individuals familiar with the impact of neurological diseases, the task list can be overwhelming. Why make things more difficult by going it alone when you can contact an experienced FINDcures representative and allow them to assist you? Our services are free of charge. The consultation costs you nothing and should you choose a service we offer, the cost, if any, is subsidized by the donations we receive.
Multiple Sclerosis – An Overview
Multiple Sclerosis – MS – is the most widespread disabling neurological condition of young adults around the world. Affecting more women than men, MS can develop at any age, but most people are diagnosed between the ages of 20 and 40. There are relapsing and remitting types of MS and progressive types, but the course is rarely predictable. Researchers still don’t fully understand the causes of MS or why the rate of progression is so difficult to determine. The good news is that many people with MS don’t become severely disabled and most have a normal or near-normal lifespan.¹
As a chronic disease, MS affects the central nervous system (the brain and spinal cord). MS occurs when the immune system attacks nerve fibers and myelin sheathing (a fatty substance which surrounds/insulates healthy nerve fibers) in the brain and spinal cord. This attack causes inflammation, which destroys nerve cell processes and myelin – altering electrical messages in the brain.²
History of Multiple Sclerosis
Drawings from autopsies done as early as 1838 clearly show what we now recognize as MS. Then, in 1868, Jean-Martin Charcot, a professor at the University of Paris who has been called “the father of neurology,” carefully examined a young woman with a tremor of a sort he had never seen before. He noted her other neurological problems including slurred speech and abnormal eye movements, and compared them to other patients he had seen. When she died, he examined her brain and found the characteristic scars or “plaques” of Multiple Sclerosis. Dr. Charcot wrote a complete description of the disease and the changes in the brain that accompany it. However, he was baffled by its cause and frustrated by its resistance to all of his treatments.3
MS by the Numbers
The Multiple Sclerosis Foundation estimates that more than 400,000 people in the United States and about 2.5 million people around the world have MS. About 200 new cases are diagnosed each week in the United States. Rates of MS are higher farther from the equator. It’s estimated that in southern states (below the 37th parallel), the rate of MS is between 57 and 78 cases per 100,000 people. The rate is twice as high in northern states (above the 37th parallel), at about 110 to 140 cases per 100,000. The incidence of MS is also higher in colder climates. People of Northern European descent have the highest risk of developing MS, no matter where they live. The lowest risk appears to be among Native Americans, Africans, and Asians.4
MS symptoms are variable and unpredictable. No two people have exactly the same symptoms, and each person’s symptoms can change or fluctuate over time. One person might experience only one or two of the possible symptoms while another person experiences many more.
Explore the list below to find more information about the symptoms you or someone you care about is experiencing. Most of these symptoms can be managed very effectively with medication, rehabilitation and other management strategies. Effective symptom management by an interdisciplinary team of healthcare professionals is one of the key components of comprehensive MS care.
Most Common Symptoms
- Fatigue occurs in about 80% of people, can significantly interfere with ability to function at home and work, and may be the most prominent symptom in a person who otherwise has minimal activity limitations.
- Walking (Gait) difficulties related to several factors including weakness, spasticity, loss of balance, sensory deficit and fatigue, and can be helped by physical therapy, assistive therapy and medications.
- Numbness or tingling of the face, body, or extremities (arms and legs) is often the first symptom experienced by those eventually diagnosed as having MS.
- Spasticity refers to feelings of stiffness and a wide range of involuntary muscle spasms; can occur in any limb, but it is much more common in the legs.
- Weakness in MS, which results from deconditioning of unused muscles or damage to nerves that stimulate muscles, can be managed with rehabilitation strategies.
- Vision problems are commonly the first symptom of MS for many people. Onset of blurred vision, poor contrast or color vision, and pain on eye movement can be frightening — and should be evaluated promptly.
- Dizziness and vertigo impact many people with MS. They may feel off balance or lightheaded, or — much less often — have the sensation that they or their surroundings are spinning (vertigo).
- Bladder problems or dysfunction, which occurs in at least 80% of people with MS, usually can be managed quite successfully through dietary and fluid management, medications, and catheterization.
- Sexual problems are common in the general population including people with MS. Sexual responses can be affected by damage in the central nervous system, as well by symptoms such as fatigue and spasticity, and by psychological factors.
- Bowel problems including constipation is a particular concern among people with MS, as is loss of control of the bowels. Bowel issues can typically be managed through diet, adequate fluid intake, physical activity and medication.
- Pain syndromes are common in MS. In one study, 55% of people with MS had “clinically significant pain” at some time, and almost half had chronic pain.
- Cognitive changes refers to a range of high-level brain functions affected in 50% of people with MS, including the ability to learn and remember information, organize and problem-solve, focus attention and accurately perceive the environment.
- Emotional changes can be a reaction to the stresses of living with MS as well as the result of neurologic and immune changes. Bouts of depression, mood swings, irritability, and episodes of uncontrollable laughing and crying pose significant challenges for people with MS and their families.
- Depression studies have suggested that clinical depression — the severest form of depression — is among the most common symptoms of MS. It is more common among people with MS than it is in the general population or in persons with many other chronic, disabling conditions.
Less Common Symptoms
- Speech problems, including slurring (dysarthria) and loss of volume (dysphonia), occur in approximately 25-40% of people with MS, particularly later in the disease course and during periods of extreme fatigue. Stuttering is occasionally reported as well.
- Swallowing problems (referred to as dysphagia) result from damage to the nerves controlling the many small muscles in the mouth and throat.
- Tremor, or uncontrollable shaking, can occur in various parts of the body because of damaged areas along the complex nerve pathways that are responsible for coordination of movements.
- Seizures — which are the result of abnormal electrical discharges in an injured or scarred area of the brain — have been estimated to occur in 2-5% people with MS, compared to the estimated 3% of the general population.
- Breathing problems may occur in people whose chest muscles have been severely weakened by damage to the nerves that control those muscles.
- Itching (referred to as Pruritis) is one of the family of abnormal sensations — such as “pins and needles” and burning, stabbing or tearing pains — which may be experienced by people with MS.
- Headache is not a common symptom of MS, yet, some reports suggest that people with MS have an increased incidence of certain types of headache.
- Hearing loss affects about 6% of people who have MS. In very rare cases, hearing loss has been reported as the first symptom of the disease.
At this time, there are no symptoms, physical findings or laboratory tests that can, by themselves, determine if a person has MS. Several strategies are used to determine if a person meets the long-established criteria for a diagnosis of MS, and to rule out other possible causes of whatever symptoms the person is experiencing. These strategies include a careful review of the person’s medical history, a neurologic exam and various tests including magnetic resonance imaging (MRI), evoked potentials (EP) and spinal fluid analysis.
In order to make a diagnosis of MS, the physician must:
- Find evidence of damage in at least two separate areas of the central nervous system (CNS), which includes the brain, spinal cord and optic nerves AND
- Find evidence that the damage occurred at least one month apart AND
- Rule out all other possible diagnoses 
Current Treatment Methods
Today, MS is not a curable disease. Effective strategies can help modify or slow the disease course, treat relapses (also called attacks or exacerbations), manage symptoms, improve function and safety, and address emotional health.
For most people with MS, the neurologist functions as the leader of the team. As a specialist in diseases of the nervous system, it is the neurologist’s job to make the MS diagnosis, identify treatment strategies and coordinate these treatment efforts with others.
The model of comprehensive MS care involves the expertise of many different healthcare professionals — each contributing in a unique way to the management of the disease and the symptoms it can cause. Sometimes this team works within a single center, offering “one-stop shopping” for people with MS. More often, people are referred by their MS physician to other specialists in the community. In either case, the goal is comprehensive, coordinated care to manage the disease and promote comfort, function, independence, health and wellness.
Life-style Impact and Challenges
It is common for people with MS to feel constantly tired. This fatigue can impact all aspects of life, including the ability to go out and do things and the ability to use the brain effectively.
The symptoms of MS can give rise to constant discomfort and disability that limits the ability to do everyday things many people take for granted.
People with MS may have to attend lots of medical appointments. They must also live with the uncertainty of when the next attack of symptoms may happen.
Together, these reduce a person’s quality of life. The ongoing frustration of such restrictions results in some people with MS developing depression.
There are many occupational therapy and relaxation programs that can help people with MS to manage their symptoms. These programs can help people with MS improve their performance of daily activities despite the limitations imposed by the condition. A range of patient groups is also available to offer support to people living with MS.
Recent research suggests that a protein-rich diet may improve the outlook for MS by reducing inflammation. MS is not itself fatal, but the mortality rate among people with MS is higher than in the general population. The increased number of deaths is due to complications of MS, such as infection, diseases affecting the lungs or heart, or suicide.
People with MS can be symptom-free for many years. However, living with MS can be both physically and mentally overwhelming when symptoms are present. [viii]
Sources of Further Information and Research
- National Multiple Sclerosis Society http://www.nationalmssociety.org
- National Institute of Neurological Disorders and Stroke http://www.ninds.nih.gov/disorders/multiple_sclerosis/detail_multiple_sclerosis.htm#3215_1
- MS Voice http://www.msvoice.com/
- Mayo Clinic http://www.mayoclinic.org/diseases-conditions/multiple-sclerosis/home/ovc-20131882
- A variety of blogs via Healthline http://www.healthline.com/health/multiple-sclerosis/best-blogs-of-the-year#2
- National Institutes for Health https://search.nih.gov/search?utf8=%E2%9C%93&affiliate=nih&query=multiple+sclerosis
- Multiple Sclerosis International Federation https://www.msif.org
5. National MS Society http://www.nationalmssociety.org/Symptoms-Diagnosis/MS-Symptoms
6. National MS Society http://www.nationalmssociety.org/Symptoms-Diagnosis/Diagnosing-MS
7. National MS Society http://www.nationalmssociety.org/Treating-MS/Comprehensive-Care
viii. Medical News Today http://www.medicalnewstoday.com/articles/310864.php