By Patricia Silva, PhD.
An autoimmune disease, multiple sclerosis (MS) results when the body’s immune system starts to attack and destroy myelin, the protecting coating on nerve fibers in the brain and/or spinal cord of the central nervous system. Attacks on the myelin sheath cause it to become inflamed in small patches (called plaques or lesions), and the inflammation disrupts messages traveling along the nerves, slowing and even blocking them. This loss of effective nerve communication leads to disease symptoms.
While a number of symptoms are common to MS patients, their severity and nature can vary widely. Each MS patient is believed to be affected differently.
The most common symptoms of multiple sclerosis include:
• Fatigue, an intense feeling of tiredness often accompanied by a loss of the urge and ability to work or do daily tasks. This is a major reason for the long-term employment difficulties reported by people with MS. Fatigue is a common multiple sclerosis symptom, found in 80% of all cases.
• Numbness and tingling of the face, body, arms and legs. Numbness is often an early MS symptom, often reported prior to an MS diagnosis. Facial muscle twitching and trigeminal neuralgia have also been reported in patients.
• Muscle spasms, causing stiffness in muscles of the limbs and most involuntary muscles.
• Walking difficulties are a result of fatigue, spasticity (muscle tightness and resistance to movement), loss of the sense of balance, and a deficit in sensory nerve impulses.
• Bladder problems are also found in almost 80% of MS patients. Bladder dysfunction in MS can range from frequent urination to urinary incontinence, an inability to fully empty the bladder, and urinary infections.
• Lightheadedness, dizziness, and vertigo.
• Bowel problems. Constipation is the most common symptom here, and bladder incontinence, while less common, is associated with constipation.
• Pain, either neuropathic or musculoskeletal, has been reported by patients. One study found 50% to 55% of patients had either “clinically significant” chronic or occasional pain as a result of the disease.
• Vision problems can also be an early disease symptom, and include blurred vision, double vision, temporary loss of vision, eye pain (especially when moving the eye), or color blindness. (Optical neuritis, due to damage to the optic nerve, is a complication of MS.)
• Cognitive changes, such as problems with thinking or reasoning, learning, problem-solving, and planning, are among the range of high-level brain functions affected by the disease.
• Sexual problems, including erectile dysfunction in men.
• Emotional changes, including depression, anxiety, and mood swings.
Some of the less common symptoms of MS include slurred or slow speech, tremors (uncontrolled shaking) , dysphagia (swallowing problems), uncontrolled itching (sensations of being stabbed or pricked by needles), hearing loss, and headache.
Multiple sclerosis is a lifelong condition, but it is possible in most cases to address symptoms with treatments that range from medications to physical therapy or assisted therapy. Again, disease symptoms and their severity vary widely among people diagnosed with multiple sclerosis.
There is no single test to diagnosis multiple sclerosis, but a thorough physical and neurologic examination that includes imaging and other tests, combined with a careful study of a patient’s medical history, are a first step to diagnosing the disease and, importantly, ruling out other possible causes of symptoms being reported. A patient should report symptoms common to multiple sclerosis (MS) quickly to a physician, as early treatment can help to counter the disease’s intensity and progression.
Criteria known as the McDonald Criteria (revised in 2010) has established guidelines for tests used to speed diagnosis. According to the National MS Society, a physician under this criteria must:
- Assess for damage in at least two separate areas of the central nervous system (brain, spinal cord and optic nerves)
- Find evidence that damage took place at least one month apart
- Rule out other possibilities for the CNS damage and demyelination found
Some possible other causes of symptoms include vitamin deficiencies, viral infections that cause inflammation of the brain and spinal cord, Guillian Barre syndrome (which causes demyelination of the peripheral nervous system), acute disseminated encephalomyelitis (ADEM, an isolated post-infection or post-vaccination autoimmune attack on the CNS), and Schilder disease (characterized in children and young adolescents by demyelination).
The most important tests for confirming MS include:
- Magnetic Resonance Imaging (MRI), which helps to detect the lesions caused as a result of demyelination. MRI is the most non-invasive and sensitive way of imaging the brain and spinal cord.
- Cerebrospinal Fluid (CSF) is the clear liquid the cushions the brain and spinal cord, and changes in this fluid can indicate problems. According to the National Health Service (U.K.), a lumbar puncture, usually done under a local anesthetic, is used to remove a fluid sample, which will then be tested for immune cells and antibodies.
- Evoked Potentials (EP) are tests to measure the electrical activity of the brain in response to stimulation, checking the strength of the nervous system and the speed of impulses based on the stimulation of specific sensory pathways. These tests, commonly done to the eyes, can reveal demyelination.
- Neurological Exams look for changes, weakness, or abnormalities in vision, eye movements, extremity strength (hands or legs), balance and co-ordination, speech, and reflexes.
- Blood cultures are done to rule out other possible causes of symptoms, like a vitamin deficiency.
There are no specific therapies that can effectively cure patients with multiple sclerosis. However, there are a number of multiple sclerosis treatment options, particularly for the relapsing-remitting form of the disease. The two basic multiple sclerosis treatment approaches that are necessary and helpful in treatment regimens are:
- Immunomodulation therapies which can control the inflammation of myelin sheaths and help restore the central nervous system.
- Supportive therapies to take care of the symptoms and exacerbations, to help the patient lead as normal a life as possible.
Some common medications prescribed to MS patients for immunomodulation therapy include interferon beta-1a (administered intramuscularly) and interferon beta-1b (injected subcutaneously), natalizumab, and mitoxandron (administered intravenously).
Emergency medications to treat exacerbations include intravenous immunoglobulins or plasmapheresis.
Acute relapses can be treated with methylprednisolone, and aggressive forms of MS can be treated with cyclophosphamide, which can stabilize the condition.
There is no FDA-approved drug currently available to treat the progressive forms of multiple sclerosis (PPMS and SPMS). However, a great deal of research has shed light on the potential of interferon beta-1b to treat the disease. The medications mentioned above are mostly for the relapsing forms of the disease.
A few immunomodulatory drugs under research include alemtuzumab (a monoclonal antibody granted Fast Track status by the FDA, for treatment of RRMS), daclizumab (anti-CD 25 antibody), ocrelizumab (anti-CD 20) and myelin peptide mixtures of MBP 89, PLP 139-151, and MOG 35-55.
Standard therapies are available from physicians on treating specific symptoms.
Apart from being a clinically significant condition, MS is also an emotionally stressful condition. An MS patient needs the emotional support of family members and loved ones. Regular counseling and rehabilitation therapy are also helpful and often necessary to help patients.
Maintaining personal hygiene and fitness. eating a healthy diet, going for routine check-ups to the physician, stress management, even acupuncture – all are important care strategies which help patients lead a normal life.
Multiple sclerosis (MS) is a progressive neurological disorder characterized by demyelination, which is the loss of the insulating cover around nerve fibers called the myelin sheath. This loss leads to delayed or missing nerve signals.
MS is classified into four main types by the National MS Society Advisory Committee on Clinical Trials in MS. The types are based on the phase and severity of disease progression. The four types are: clinically isolated syndrome (CIS); relapsing-remitting MS (RRMS); secondary progressive MS (SPMS), and; primary progressive MS (PPMS)
Clinically isolated syndrome (CIS)
In CIS, a patient first experiences MS-like symptoms resulting from nerve inflammation and demyelination lasting more than 24 hours, such as vision problems, difficulty walking, or numbness. Patients with CIS may never have another episode of symptoms, or they could progress into MS at a later date. Patients are considered to have CIS until physicians find more evidence for MS. If MRI imaging shows a lesion in the nervous system, it is likely the symptoms will reoccur and the patient will be diagnosed with MS. The 2017 diagnostic criteria state that a diagnosis of MS requires two nervous system attacks at different locations and at two different times. Sometimes attacks can occur without symptoms and MRI imaging can be used to find other regions of the nervous system that might have been affected.
Relapsing-remitting MS (RRMS)
The most common form of MS is RRMS estimated to account for 80-85 percent of all cases. This form of the disease is characterized by periods of neurodegeneration where new symptoms occur or old symptoms worsen (relapsing), and periods of rest where some or all normal function is restored (remitting). While patients may recover during the remission periods, the disease generally progresses over time and some symptoms are likely to persist even during remission periods.
Secondary progressive MS (SPMS)
RRMS often continues to worsen and eventually may change to SPMS, at which time the disease transitions from relapse and remission phases into a steady progression of symptoms. There still may be periods when the disease is said to be active or not active based on MRI evidence of increasing nervous system damage, and with or without progression based on changes in symptoms. A diagnosis of SPMS usually comes after reviewing the progression of the disease, but there currently are no clear criteria for determining when MS changes from RRMS to SPMS.
Primary progressive MS (PPMS)
In PPMS, the disease starts in the attack phase and there are very few periods of remittance (recovery). However, there sometimes may be periods of stability when symptoms do not worsen. As in the case of SPMS, there are times when the disease can be active or not active, with or without progression. Periods of remission may occur later in the disease. It is estimated that 10-15 percent of patients have PPMS.
Other terms are sometimes used to describe rare versions of MS progression.
Malignant MS is a form of MS similar to PPMS in which the disease does not have periods of relapse and remission, but instead progresses very rapidly. Other names for this form are fulminant/fulminate, Marburg, aggressive, or advanced MS.
Radiologically isolated syndrome (RIS)
In RIS, an MRI taken for other medical reasons reveals evidence of brain lesions that look like MS. In such cases, the patient will not have had symptoms of the disease. Someone with RIS should be monitored and may be diagnosed with MS later if more symptoms appear.
Another form of MS is inactive or benign MS. This form of the disease shows little or no change over many years, but could change at a later date. Another term sometimes used for inactive MS is “burned-out” MS, in which the disease progression appears to slow after a long period of worsening.
(Editor’s Note: At End-Stage, MS is accepted as a hospice-appropriate diagnosis. If you are caring for a friend or loved one who is at the end-stage of MS, speak to his or her healthcare professional about a reference to a nearby hospice agency for comfort care OR call a nearby hospice program and speak to someone about the situation.)
Eligibility Guidelines: When Does a Patient with Multiple Sclerosis Become Hospice-Appropriate?
- Ask yourself: “Would I be surprised if this patient died within the next year?” If the answer is “no,” then it is time to consider hospice care.
- Even though hospice patients are certified to have a 6 month prognosis, studies have shown that life expectancy is over-estimated. Studies also show that patients who are admitted earlier rather than later to hospice care live longer and have better quality of life than those who are admitted in the last few days or weeks of life.
- Hospice services are available across the lifespan to anyone who needs them.
The patient meets at least one of the following (1 or 2)
1. Severely impaired breathing capacity with all of the following findings:
- Dyspnea at rest
- Vital capacity less then 30%
- Requirement for supplemental oxygen at rest
- The patient declines artificial ventilation
2. Rapid disease progression with either a or b below:
Rapid disease progression as evidenced by all of the following in the preceding twelve (12) months:
- Progression from independent ambulation to wheelchair or bed-bound status
- Progression from normal to barely intelligible or unintelligible speech
- Progression from normal to pureed diet
- Progression from independence in most or all Activities of Daily Living (ADLs) to needing major assistance by caretaker in all ADLs
a. Severe nutritional impairment demonstrated by all of the following in the preceding twelve (12) months:
- Oral intake of nutrients and fluids insufficient to sustain life
- Continuing weight loss
- Dehydration or hypovolemia
- Absence of artificial feeding methods
b. Life-threatening complications demonstrated by one or more of the following in the preceding twelve (12) months:
- Recurrent aspiration pneumonia (with or without tube feeding)
- Upper urinary tract infection (Pyelonephritis)
- Recurrent fever and antibiotic therapy
- Stage 3 or 4 decubitus ulcer(s)
In the absence of one or more of the above finding, rapid decline or co-morbidities may also support eligibility for hospice care.