Multiple Sclerosis Final Stages: What to Expect & More

Multiple Sclerosis (MS) is a complex, chronic illness that affects each person differently. While the disease can remain mild for some, others may progress to a more severe stage known as end-stage or final-stage MS, which brings unique challenges and requires a focused approach to care.

If you or a loved one is experiencing MS, consider enrolling in multiple sclerosis clinical trials as a treatment option. Reaching out to healthcare providers, support groups, and MS advocacy organizations can offer valuable resources and support to help you navigate this journey with empathy and dignity.

Understanding what to expect and preparing for the future can make this difficult journey more manageable for both patients and their loved ones.

What is Multiple Sclerosis and How Does it Progress?

Multiple Sclerosis is an autoimmune disease where the immune system attacks the protective covering of nerve fibers, called myelin, in the central nervous system. Over time, this damage disrupts the signals between the brain and body, leading to symptoms that can range from mild to debilitating.

The progression of MS varies widely. While not everyone with MS will reach the severe end-stage of the disease, those who do may face significant disabilities and life-threatening complications. End-stage MS requires an understanding of how to manage complex symptoms and prioritize quality of life.

Also Read: Tumefactive Multiple Sclerosis: An Anomaly?

Multiple Sclerosis Final Stages: Symptoms

As MS advances, the body may experience more symptoms simultaneously, which often become more intense or even permanent. Here are some of the symptoms common in the multiple sclerosis final stages:

• Limited Mobility and Paralysis: Movement may be highly restricted, often requiring a wheelchair or full-time assistance.
• Balance and Coordination Issues: Standing, walking, and even sitting upright can become challenging.
• Severe Muscle Spasms and Stiffness: Cramping, stiffness, and painful spasms in muscles may become more frequent.
• Pain and Discomfort: Chronic pain affecting muscles, nerves, and joints can significantly impact comfort and quality of life.
• Bowel and Bladder Dysfunction: These issues become more pronounced and can cause significant discomfort and social withdrawal.
• Difficulty Swallowing (Dysphagia): Swallowing difficulties can lead to choking and complications with eating.
• Breathing Problems: Weak respiratory muscles may lead to shallow breathing and increased susceptibility to respiratory infections like pneumonia.
• Cognitive Impairments: It is estimated that 40-70% of people with MS may develop cognitive difficulties at some point. Memory problems, confusion, and other cognitive difficulties can develop, impacting decision-making and daily care.
• Speech Problems and Vision Loss: Some individuals may have trouble speaking clearly and may lose vision.
• Fatigue and Depression: Constant fatigue and emotional strain can lead to depression which requires psychological support and management.

Multiple Sclerosis Final Stages: Serious Complications

In the advanced stages, certain MS complications are more likely and can significantly affect health and quality of life:

• Pressure Sores: Also known as bed sores, can develop from prolonged immobility.
• Aspiration Pneumonia: This is a type of respiratory infection that occurs when food, saliva, or other substances are inhaled into the lungs, often due to difficulty swallowing.
• Bladder and Kidney Infections: Urinary issues can increase the risk of infections, which may require immediate medical attention.
• Depression: As MS progresses, depression can worsen, impacting both physical health and the desire to engage in life.

Because coexisting health conditions can exacerbate MS symptoms, it’s essential to maintain regular medical care to monitor and manage all health aspects comprehensively.

Multiple Sclerosis Final Stages: Treatment Approaches

There is currently no cure for MS, and treatment goals in the final stages shift to managing symptoms and enhancing quality of life. Here are some common approaches:

• Symptom Management and Pain Relief: Medications can help with muscle spasms, pain, and other severe symptoms, while physical therapy can help maintain some degree of mobility.
• Mobility Aids: Wheelchairs, walkers, and other devices can assist with movement, supporting independence as much as possible.
• Palliative Care: The focus of palliative care is on the patient’s quality of life, addressing physical symptoms, and providing emotional and spiritual support. Palliative care can be administered at home, in a hospital, or through specialized facilities.
• Disease-Modifying Therapies (DMTs): In 2017, the FDA approved ocrelizumab (Ocrevus) as the first disease-modifying therapy for people with progressive MS. However, while helpful, these therapies are less effective in progressive forms of MS than in relapsing MS.

Multiple Sclerosis Final Stages: Life Expectancy

While MS is not usually fatal, it can shorten life expectancy by an average of 7 years, often due to complications arising from immobility, infections, or other coexisting health conditions. With attentive medical care, lifestyle adjustments, and comprehensive support, many people with MS can still maintain a meaningful quality of life even as the disease progresses.

Also Read: Multiple Sclerosis: What Does Life Expectancy Look Like?

Planning for End-of-Life Care: Multiple Sclerosis Final Stages

Planning for the future is crucial, especially for those facing multiple sclerosis in the final stages. Here are some key areas to consider:

• Home Adaptations and Assistive Technology: Modifying the home environment can improve safety and ease daily tasks. Consider ramps, grab bars, and assistive devices for mobility and independence.
• In-Home Nursing or Assisted Living Facilities: As daily activities become more challenging, hiring in-home nursing help or moving to an assisted living facility can provide the necessary support and ease the caregiving load.
• Emotional and Spiritual Needs: Emotional and spiritual support is vital in the later stages. Counseling, spiritual care, and support groups can help individuals, and their families find meaning, closure, and comfort.
• Caregiver Support: Caring for someone in the final stages of MS is both rewarding and challenging. Regular breaks, access to support groups, and even professional respite care can make a world of difference.

Also Read: Multiple Sclerosis Self-care: Navigating the Journey

Takeaway

Living with MS is a lifelong journey, and while the final stages bring many challenges, they also provide opportunities for support, connection, and care. Having honest conversations about personal wishes and end-of-life care can ensure that patients feel supported, valued, and comfortable.