Multiple sclerosis (MS) is an immune-mediated chronic condition of the central nervous system. It is characterized by the destruction of myelin, which is the protective sheath that covers nerve axons in the brain and spinal cord. Made up of fats and proteins, the myelin sheath allows for rapid transmission of nerve impulses. When this protective layer is damaged, lesions (plaques) develop throughout the nervous system and nerve impulses slow down.
Multiple sclerosis usually develops between the ages of 20 and 40, with 32 years being the average age of diagnosis. While the course of the disease is variable, permanent disability tends to set in within 10 to 15 years. Complications are numerous and include decreased mobility, cognitive dysfunction, chronic vertigo, visual impairment, dysphagia, recurrent UTIs, constipation, fatigue, pain, and depression.
Risk factors for multiple sclerosis are numerous and include genetic, environmental, lifestyle, and immune-related factors.
- Genetic risk factors – Though not an inherited condition, having a first-degree relative with MS is a known risk factor. Further, studies suggest that when the first-degree relative is on the maternal side, this poses a greater risk for developing the condition. Additionally, women are three to four times as likely to develop MS than men. And, one of the strongest genetic determinants is the presence of a particular variant of a gene involved in the immune response and the body’s ability to distinguish between pathogens and the body’s own tissues.
- Environmental risk factors – Multiple sclerosis is more common in areas further from the equator. Temperature is thought to play a role in the development of MS due to the fact that it influences the spread of viruses when people spend a lot of time together indoors. Inadequate vitamin D exposure is also associated with the development of MS, though researchers don’t fully understand the connection. Individuals living in areas further from the equator simply have less exposure to sunlight, and lower levels of naturally occurring Vitamin D. Diet, though a modifiable risk factor, can be heavily influenced by geography. Individuals living in areas of the world that get less sunlight tend to eat diets higher in saturated fats which increases inflammation and the risk for developing MS.
- Modifiable risk factors – MS risk is increased in individuals with obesity and in those who smoke. Individuals with low Vitamin D are also at risk. However, supplementation can be protective, with research indicating that taking daily Vit D can lower the risk of MS in women. Additionally, a diet high in fish oils and increased exposure to sunlight are other modifiable factors that could help reduce the risk of developing the condition.
- Immune-related risk factors – Individuals with other autoimmune diseases are at higher risk for developing MS. Those with type 1 diabetes are three times more likely to develop MS, while those with inflammatory bowel disease are 1.5 times more likely. Other autoimmune conditions linked to higher risk for MS include pernicious anemia, psoriasis, and thyroid disorders.
Additionally, exposure to the Epstein-Barr virus is showing it to be a leading cause of multiple sclerosis. A 2010 study showed that more than 99% of individuals with MS had been infected with the Epstein-Barr virus at some point in their lives. In fact, recent studies show that when an individual is infected with EBV, the risk for developing MS increases more than 30-fold, making EBV infection a leading cause of MS. It is thought to be due to structural similarities between EBV and brain proteins, so the immune system is more easily confused as to which is pathogenic and which is self. Varicella-zoster has also been shown to increase the risk of MS as well.
The Four Types of Multiple Sclerosis
How MS progresses in an individual is unpredictable and can vary from person to person. The four progression types are relapsing-remitting, primary progressive, secondary progressive, and clinically isolated syndrome.
Relapsing-remitting MS (RRMS) – This is the most common progression type of MS, with about 85% of individuals initially diagnosed with this subtype. RRMS is characterized by relapses of new or worsening symptoms followed by periods of complete or partial remission. During remission the patient may experience a complete resolution of symptoms with no increase in disability. In other cases, even with partial remission, the persisting symptoms can cause lasting disability. During remissions, the disease does not progress or worsen.
Primary progressive MS (PPMS) – In this subtype of MS, the individual experiences worsening neurological function and disability without any relapses or remissions. Approximately 15% of individuals with MS have this subtype.
Secondary progressive MS (SPMS) – In secondary progressive MS, the individual’s disease course initially starts out as relapsing-remitting but then changes to a progressive course where the condition worsens over time.
Clinically isolated syndrome (CIS) – Clinically isolated syndrome is an initial episode of inflammation and demyelination that causes neurological symptoms and persists for at least 24 hours. Though individuals with MS can have clinically isolated syndrome, not everyone with CIS develops multiple sclerosis. However, they do have a higher risk for future occurrences and development of RRMS if an MRI shows the presence of brain lesions.
Now that you have a basic understanding of multiple sclerosis, let’s take a look at caring for these patients using the Straight A Nursing LATTE method.
L: How does the patient LOOK?
Symptoms of MS vary from person to person and are related to lesion locations and how severe the damage is. Some common signs and symptoms include:
- Numbness or tingling – This is often the first symptom experienced by those with MS, and can occur anywhere in the body. When numbness and tingling become painful, this is considered neuropathic pain, which can be difficult to treat.
- Difficulty walking – Walking or gait difficulties are a consequence of muscle weakness, loss of balance, muscle spasticity, fatigue, and sensory deficits.
- Fatigue – Fatigue occurs in up to 80% of patients with MS and can have a serious impact on quality of life.
- Weakness – Weakness can be a result of damaged nerves that stimulate muscles, or underuse of muscles which leads to deconditioning.
- Muscle spasticity – Muscle spasms can be significantly painful for individuals with MS and greatly affect mobility.
- Heat intolerance – Many people with MS will have a temporary worsening of symptoms when exposed to heat or when they have a fever. Even an increase of just one quarter to one half a degree can further impair electrical conduction in demyelinated nerves. When symptoms worsen with increased temperature, this is called Uhthoff phenomenon.
- Cognitive impairment – Cognitive changes in MS are varied and can include difficulty with memory, problem solving, focus, word-finding, and information processing. However, for most people, the changes are mild. In most cases, intellect, reading comprehension and long-term memory are not affected.
- Bladder dysfunction – Bladder dysfunction can include urinary frequency/urgency, incontinence, and urinary retention which can put the patient at higher risk for a UTI.
- Bowel dysfunction – Patients with MS can experience both constipation and fecal incontinence.
- Vertigo – Chronic vertigo can exacerbate difficulties with balance and gait.
- Ophthalmologic problems – Vision problems can be varied in individuals with MS and can include blurred vision, pain with eye movement, poor color vision, and optic neuritis.
- Dysesthesia – Also known as an “MS hug,” dysesthesia is a sensation of squeezing or tightening around the torso and is often a first sign of relapse.
- Lhermitte’s phenomenon – This is a sudden and brief electrical shock sensation that spreads throughout the body when the neck is flexed and occurs in 25 to 33% of individuals with MS.
- Pain – Studies show that more than half of all patients with MS experience significant pain at some point, while almost 50% suffer from chronic pain.
- Depression – Understandably, depression is a common symptom experienced by those with MS.
Less common symptoms include dysphagia, dysarthria, dysphonia, hearing loss, seizures, tremor, loss of taste, and respiratory difficulties.
A: How do you ASSESS the patient with multiple sclerosis?
Assessments for a patient with MS will vary depending on the individual’s specific manifestations. Common assessments include:
- Mobility – Assess the patient’s gait and walking ability, keeping in mind that these individuals are at high risk for falls.
- Disability – Assess the patient’s level of disability utilizing a validated tool such as the Expanded Disability Status Scale (EDSS). This scale helps the healthcare team quantify the level of disability and track progression (or remission) over time. The scale looks at things like muscle weakness, coordination, sensation, speech, swallowing, bowel/bladder function, vision, and cognitive function.
- Fatigue – Many patients with MS suffer from fatigue, which can greatly diminish their quality of life and ability to perform their ADLs. Fatigue may be directly related to MS or associated with medications, disordered sleep, pain or depression.
- Pain – Utilize a systemic approach to pain assessment such as the OLDCARTS acronym (onset, location, duration, characteristics, associated symptoms, relieving symptoms, timing or triggers, and severity).
- Bladder function – Incontinence and urinary retention both put your patient at higher risk for UTI. In addition, incontinence can lead to skin breakdown and loss of independence.
- Dysphagia – An individual with MS may have difficulty swallowing, which places them at high risk for aspiration, airway obstruction, and pneumonia.
- Weight – Dysphagia, pain, fatigue, and depression can all lead to reduced nutritional intake and unintentional weight loss.
- Depression – Assess the patient for signs of depression and consider using a depression screening tool such as the Patient Health Questionnaire.
T: What TESTS are utilized for a patient with MS?
Diagnosis of multiple sclerosis can be a prolonged process and involves ruling out other potential causes. Multiple sclerosis may be suspected when an individual seeks medical care for neurological symptoms that have no other obvious cause. Specific tests utilized in the diagnosis and ongoing evaluation of a patient with MS include:
- Brain and spinal cord MRI – This is the key test utilized to confirm a diagnosis of MS. Magnetic resonance imaging shows the demyelinating plaques, also referred to as lesions. The lesions in MS are typically located in white matter areas of the brain and in the spinal cord. Following diagnosis, patients with MS receive routine MRIs to monitor the course of the disease.
- Lumbar puncture – CSF analysis may be utilized if MRI results are inconclusive. Patients with MS generally have consistently elevated IgG levels and other CSF abnormalities.
- Evoked potential test – This test records electrical signals in the central nervous system when peripheral sensory organs are stimulated.
- Blood tests – Blood tests may be conducted to rule out other conditions and to also test for specific antibodies associated with the disease.
T: What TREATMENTS are provided for a patient with multiple sclerosis?
There is no cure for multiple sclerosis, but there are a wide range of treatments available to help manage symptoms, slow disease progression, improve functional mobility, and increase recovery during relapses or flares.
Corticosteroids – Prednisone PO and methylprednisolone IV are utilized in acute exacerbations to reduce nervous system inflammation and reduce symptoms.
Disease modifying therapies (DMTS) – It is recommended that individuals with RRMS begin disease modifying therapy as early as possible and that their use is associated with lower risk of long-term disease progression. DMTs include:
- Monoclonal antibodies (ex: ocrelizumab and rituximab). These medications are administered IV and, though highly effective, come with serious life-threatening adverse effects such as infection, progressive multifocal leukoencephalopathy (PML) and immune-mediated colitis.
- Beta interferons (ex: Avonex, Betaseron) and glatiramer acetate were the first DMTs utilized in MS and may be beneficial for patients who don’t require the most effective medications and are seeking less significant adverse effects. These medications are injected daily, every other day or weekly, depending on which is utilized.
- Sphingosine 1-phosphate receptor modulators (ex: fingolimod) are PO medications that work by decreasing the migration of lymphocytes into the CNS. Though these medications are easy to administer and don’t require an injection or infusion, serious adverse effects can occur. Some examples include asystole, heart block, hepatotoxicity, PML, skin cancer, posterior reversible encephalopathy syndrome (PRES), among others.
- Fumarates (ex: dimethyl fumarate) are PO medications that modify the cellular response to oxidative stress. Adverse reactions include hepatotoxicity, PML, and life-threatening infections.
- Teriflunomide is a pyrimidine synthesis inhibitor used in relapsing forms of MS. It is a PO medication taken daily that has anti-inflammatory effects. Adverse effects include bone marrow suppression and hepatotoxicity.
- Cladribine is an antineoplastic agent that can reduce disability progression and rate of relapse. It is taken PO or IV and comes with a significant side effect profile that includes heart failure, hepatotoxicity, neutropenia, PML and malignancy.
- Bruton tyrosine kinase inhibitors (BTKIs) are a new type of DMT that are in the later phases of clinical trials. They are showing promise in reducing inflammation and neurological degeneration in patients with MS.
Vitamin D – Because MS has been associated with low levels of vitamin D, supplementation may be utilized.
Simvastatin – Typically utilized to treat hyperlipidemia, simvastatin is currently being studied as a possible treatment to slow the progression of secondary progressive multiple sclerosis.
Hematopoietic stem cell transplant (HSCT) – Evidence is supporting the use of autologous stem cell transplant to “reset” the immune system and halt the inflammation that contributes to multiple sclerosis. It may be utilized in some individuals with relapsing MS who are under 50 years of age and have had MS for less than 10 years.
Symptoms are managed with a wide range of therapies, which vary depending on each individual patient’s specific symptoms or complications.
- Cognitive impairment may be addressed through cognitive rehabilitation which some studies show can improve problems associated with information processing, memory, attention and learning.
- Muscle spasms are treated through physiotherapy and pharmacology. Medications utilized include antispasmodics (ex: baclofen), muscle relaxants (ex: tizanidine and diazepam), and medications affecting the CNS (ex: gabapentin and dantrolene sodium).
- Neuropathic pain is generally treated with gabapentin or pregabalin. Other possible treatments include the anticonvulsants lamotrigine or oxcarbazepine, and antidepressants such as TCAs, SSRIs or SNRIs.
- Bowel dysfunction can be related to incontinence and/or constipation. Treatments for constipation involve increased fluids, additional fiber, and the use of laxatives or enemas as needed. Incontinence may be treated by avoiding triggering foods or activities, adding bulking agents to improve stool consistency, and taking loperamide, which is an antidiarrheal agent.
- Bladder dysfunction may be treated with medications that allow for full bladder emptying such as tamsulosin, or medications that suppress urgency such as oxybutynin.
- Gait impairment is due to many factors including weakness, sensory loss, fatigue, spasticity and vestibular dysfunction. Treatments include mobility aids, physical therapy, and the medication dalfampridine, which is a potassium channel blocker shown to improve walking in some patients.
- Muscle weakness and spasticity are addressed through various therapies which can include strength training, physical therapy, stretching, foam rolling, and massage.
- Occupational therapy is utilized to improve functional mobility so individuals with MS can participate in all aspects of life.
- Heat intolerance may be addressed by avoiding external heat (saunas, hot tubs, hot weather) and cooling strategies can be utilized to decrease internal temperature. Examples include the use of ice packs, cool showers, and drinking cold beverages.
- Fatigue is typically first treated by addressing underlying factors such as disrupted sleep, side effects of medication, heat intolerance, or depression. When nonpharmacologic therapies are insufficient, pharmacologic therapies may be utilized. Examples include stimulants and medications that promote wakefulness (ex: modafinil and methylphenidate), SSRIs (ex: fluoxetine) and amantadine.
- General, non pharmacological treatments include getting enough sleep, exercising regularly, eating a healthy diet, and avoiding or mitigating stress.
E: How do you EDUCATE the patient/family?
In addition to ensuring the patient understands how to take their medications and key adverse effects to watch for, patient education for MS focuses on decreasing risk for relapses, enhancing mobility, and managing symptoms. Some key things to teach your patient include:
- Minimize heat exposure by avoiding saunas, hot tubs, and hot showers or baths. The patient should also be advised to stay indoors in an air conditioned environment on hot or humid days. In addition, it’s also important to teach the patient cooling strategies such as drinking cold beverages, taking a cold or cool shower, and using ice packs or cooling vests to decrease core body temperature. Heat intolerance can also occur with exercise, so teach your patient strategies to cool body temperature both before and after exercise, such as taking a cool bath or shower.
- Diet can have a positive impact on MS and disease progression. For starters, a healthy diet is strongly correlated with a healthy weight which is associated with decreased risk for relapses, lesions, and disability. A healthy diet also reduces cardiovascular risk factors such as hypertension and hyperlipidemia, which are both associated with higher risk for disease progression and disability. And, we also know that diet has a direct effect on the gut microbiome which is connected with immunity and may have an impact on those with MS. While there is no specific “best diet” for individuals with MS, the general recommendations are to:
- Eat fresh vegetables and fruits on a daily basis
- Avoid processed foods
- Avoid added sugars
- Avoid eating at restaurants, which typically add excess salt, fat and sugar to foods. Instead, prepare meals at home whenever possible.
- Choose whole grains over refined options (ex: brown rice instead of white rice)
- A great resource for patients with MS is the choosemyplate.gov website
- Exercise is an important component of the plan of care and helps manage many symptoms of MS such as fatigue, strength, bone density, bowel and bladder function, cognition, and mood.
- Teach your patient that smoking and alcohol use are modifiable risk factors for disease progression, and provide resources for cessation as needed.
- Since DMTs can cause harm to a developing fetus, teach your female patients about the importance of planning their future pregnancies in consultation with their neurologist since DMTs are generally stopped during pregnancy.
- It’s important your patient understand that managing MS is a complex process that involves lifelong dedication, a multidisciplinary care team, and routine follow-up. There are many resources available that provide extensive education and guidance, as well as support. One especially helpful organization is the National MS Society, which provides patients a wealth of information and access to MS Navigators. These are professionals who connect patients with support and resources applicable to their own unique situations.
- Teach the patient that their care team can include a wide range of practitioners including a neurologist, physical therapist, occupational therapist, urologist, gastroenterologist, speech language pathologist, ophthalmologist, massage therapist, and others…depending on the patient’s specific symptoms.
- Strategies to mitigate cognitive impairment include using alarms for medication and other important reminders and a system for remembering events such as using a calendar or writing lists.
- It’s also important to encourage patients to develop healthy coping mechanisms and a support system. Ideas include joining a support group, connecting with loved ones, talking with a counselor, and continuing to participate in activities that inspire joy.
Multiple sclerosis is a condition in which the body’s own immune system attacks the myelin sheath. This disrupts nerve impulse conduction and leads to a wide range of possible symptoms and disabilities. The most common type is relapsing-remitting MS, in which the individual experiences intermittent flares where symptoms worsen for a period of time. It is mainly diagnosed through MRI which shows plaques or lesions on the brain and/or spinal cord. Common signs and symptoms include muscle weakness and spasticity, difficulty walking, numbness and tingling, vision impairments and fatigue. Heat exacerbates the condition, so individuals with MS are advised to avoid things like hot baths or showers, saunas, and being outside on hot or humid days. Common medications include DMTs for long-term management and corticosteroids when relapses occur.
Take this topic on the go by tuning in to episode 320 of the Straight A Nursing podcast. Listen from any podcast platform, or straight from the website here.
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