End stages multiple sclerosis

Understanding Late-Stage MS

Multiple sclerosis, commonly referred to as MS, is a progressive disease of the nervous system. It disrupts the flow of information within the brain and between the brain and other parts of the body. The cause of multiple sclerosis is still unknown and we do not yet have a cure.

The symptoms, progression, and severity of MS can vary from person to person, but most individuals are diagnosed between the ages of 20 and 50 and they often live another 25-35 years after their diagnosis. As the disease progresses and symptoms become more frequent and severe, palliative care experts can help with symptom management and planning for the future to ensure their patient’s wishes are met. When a patient reaches end-stage MS, hospice care is an important tool in managing pain and other symptoms.

End-Stage MS Symptoms

When a patient with multiple sclerosis begins to experience more pronounced complications, this is considered end-stage MS. Some of the end-stage MS symptoms patients may experience include:

  • Limited Mobility – Patient may no longer be able to perform daily activities without assistance. In most cases, they will be restricted to a bed or a chair. They may no longer be able to assist in grooming or other self-care.
  • Difficulty breathing – Weakened respiratory muscles and increased respiratory secretions make it difficult for patients to breathe properly.
  • Trouble eating – Patients with MS may experience a variety of challenges that interfere with nutrition. These include tremors and muscle spasms that make holding utensils difficult. They may also have trouble physically swallowing food as muscles weaken. Patients experiencing cognitive decline may also forget to eat or how to swallow even if someone else is feeding them.
  • Difficulty Communicating – Patients may experience trouble forming words and verbalizing their needs.
  • Neurological decline – Changes in brain function and mental status changes become more pronounced. Some patients also experience mood swings and depression.
  • Pain – Muscle spasms, nerve pain, and pressure sores from immobility can cause pain that is difficult to manage without support from hospice care experts trained in managing pain at end of life.
  • Skin care complications – Nutritional compromise and limited mobility lead to skin breakdown, muscle atrophy, and severe decubitus ulcers.

If a patient is experiencing any of the above symptoms, they may be eligible for hospice care. A hospice evaluation should be scheduled as soon as possible to ensure the patient receives the support they need to maintain the highest possible quality of life.

How does hospice help end-stage MS patients?

When a patient is admitted to hospice, their hospice care team will begin visiting to assist caregivers in meeting the patient’s physical, emotional, and spiritual needs.

All medications, medical supplies, and medical equipment related to the patient’s MS diagnosis will be provided at no cost to the patient or family. These can include hospital beds, geriatric chairs, and positioning tools to help increase the patient’s comfort.

The hospice nursing team will work with physicians to address any pain the patient is experiencing and to help control other end-stage MS symptoms. In the meantime, hospice aides will assist with bathing, grooming, and other personal care needs. With end-stage MS patients, this means taking particular care to address muscle atrophy, decubitus ulcers, and skin breakdowns.

The emotional support team of social workers, chaplains, bereavement counselors, and volunteers will also visit to address the patient’s emotional and spiritual needs. They will also work with the family or facility staff to ensure the patient’s end-of-life wishes are being met.

Crossroads Hospice & Palliative Care provides support to terminally ill patients in their homes, assisted living facilities, and nursing homes. To learn more about hospice eligibility for end-stage MS patients, please call 1-888-564-3405.

What to Expect in the End Stages of Multiple Sclerosis

Q1. I would like to know what the end stage symptoms of multiple sclerosis are. My mother has had MS for about 34 years now. She has chronic progressive MS and has been wheelchair-bound for the last 20 years. In the last couple of months, she has lost function in both of her arms, and cannot speak above a whisper. She has lost her short-term memory and is in terrible pain every day. She is bedridden now because of the pain. I was just wondering if there are going to be certain symptoms before she loses this battle with MS.

I’m sorry for your mother’s suffering. What you describe, unfortunately, are the symptoms of someone who has had multiple sclerosis for many years with severe brain dysfunction as a result. Although it can happen, it is rare that someone actually dies from the disease of multiple sclerosis itself. When a patient dies, it usually is related to complications of some physical disability brought on by the MS, such as infections or blood clots. As someone becomes bedridden and immobile, these complications become much more likely.

It sounds like your mother is suffering from the long-term devastating effects of MS, and is likely at some point to develop one of the complications I mentioned earlier, and that could potentially lead to death. It is possible that, if you haven’t already, it is time to consider hospice care to help treat your mother’s pain and suffering.

Q2. Is my bad MS fatigue the same as chronic fatigue syndrome? Are these syndromes related or the same, and do you have any recommendations?

Fatigue is a nearly universal symptom of multiple sclerosis, occurring in at least 80 percent of people. This symptom can significantly interfere with your ability to function at home or at work. In fact, fatigue represents a major source of disability in MS and is one of the main causes of early departure from the workplace. It is also important to realize that disabling fatigue can occur even in someone who does not have an obvious or substantial physical disability.

Although there are many factors that may contribute to fatigue, the cause of MS fatigue is currently unknown. Common contributors include medical conditions such as depression, thyroid problems, or anemia, as well as side effects of various medications, inactivity or deconditioning, and obesity.

Chronic fatigue syndrome is a “syndrome,” or collection of symptoms, that is completely unrelated to multiple sclerosis. It is characterized by overwhelming fatigue and other symptoms, typically including problems with concentration, muscle aches, and headache. Although there is similarity in some of the symptoms that affect people with MS, these are two separate disorders.

Generally, the best way to treat MS fatigue is by approaching the problem in a comprehensive fashion. Learning to meter out your energy and pace yourself is at the top of my list and is one of the biggest challenges in MS. However, this is one of the best ways to conquer MS fatigue. Learning to conserve your energy and stay cool go hand-in-hand with this, as does an appropriate exercise routine based on your own level of functioning.

It is clearly important to treat any of the other problems that may be adding to your fatigue – anemia, hypothyroidism, or depression. In addition, some people with MS are fatigued, in part, because their sleep cycle is disrupted by frequent waking at night to urinate, painful night spasms or spasticity or sleep apnea. If you’re not sleeping well, that will certainly contribute to daytime fatigue!

Finally, a number of medications can be helpful in treating fatigue, including Provigil (modafinil), Symmetrel (amantadine), and stimulant medications, all of which should be prescribed in conjunction with your neurologist and treatment team.

Q3. My dad has MS and people tell me that I am a hypochondriac, but I am scared about getting it too. I experience an excruciating pain on the lower left side of my head about three or four times a year when I throw a ball or turn my head abruptly. Is this Lhermitte’s sign? It doesn’t travel to my limbs. I also forget things easily, like words. I am scared to see a doctor because if I do have it, this could interfere with my future plans. I am only 18. Please help.

The statistical risk of a child getting MS if a parent has MS is 4 percent, so your risk is higher than most people’s risk. That said, what you’ve described is not Lhermitte’s sign, which is a shock-like sensation down both arms and legs with flexion or bending of the neck. Also, forgetting words is very common and not a typical sign of MS. Although memory problems can occur in MS, usually this is after someone has had the disease for many years. So I would think it is very unlikely — based on the description of your symptoms — that this is MS. Although I understand the anxiety of seeing your doctor, he or she would be the one who could best determine the cause of your symptoms.

Q4. I was diagnosed with MS almost four years ago. My memory is so poor; I don’t remember where I am while driving, on occasion. Is this from the MS or could I have Alzheimer’s or dementia?

Memory impairment is common in multiple sclerosis. I would discuss your concerns with the doctor who manages your MS. If your doctor thinks your symptoms are not typical for MS, then he or she may refer you for cognitive testing and evaluation.

Q5. I was diagnosed with MS in 2004. Fatigue has always been one of the biggest symptoms, accompanied by a bout of optic neuritis, vision issues, and vertigo. About three months ago, my neurologist prescribed Adderall (amphetamine) for the fatigue. It seems to be helping, but at a high price. My thought process is sharper, but my emotions are out of control. I have been depressed, had thoughts of harming myself and have become paranoid. Can this be the Adderall? I have had a lot of stress and have started to see a counselor, but I am really concerned that perhaps my body is just freaking out from all the chemicals. I also take Prozac (fluoxetine) 60 mg daily and get a monthly infusion of Tysabri (natalizumab). My doctor thinks that these treatments are okay for me, but my body seems to be saying that something is wrong.

This sounds like a complicated situation that probably does not have a simple answer. It is certainly possible that the Adderall is a contributor, and with your doctor and counselor’s permission, you might want to try to taper and withdraw this medication so that you and your treatment team can make a better judgment. I would recommend that you continue to work closely with your neurologist and the counselor, share all of these feelings and report any new symptoms you might have or develop. Depression is a common symptom in individuals with multiple sclerosis, and often there are many contributing factors.

Learn more in the Everyday Health Multiple Sclerosis Center.

Final Stages of Multiple Sclerosis: What to Expect

Multiple sclerosis is an unpredictable disease that varies from person to person. In many cases, MS can remain controlled or stay in remission. In others, symptoms can worsen and cause various disabilities. While the illness is not typically fatal, complications from MS can contribute to a person’s death.

However, the right care can help patients and families cope with multiple sclerosis’s final stages, and have the best possible quality of life during this difficult time.

A person in the final stages of MS – also called advanced multiple sclerosis – is dependent on others for their personal care and daily activities. The person has complex medical issues, cannot be left alone for very long, and is rarely able to go out.

This advanced condition is not common, but it’s important that people with MS and their loved ones understand and prepare for it, in case these needs arise.

How long can people live with MS?

People with MS are living longer than in the past, which is likely due to improved treatments and healthy lifestyle changes by patients. On average, people with MS live about seven years less than people without MS. In rare cases, MS can rapidly become fatal.

What is Multiple Sclerosis?

Multiple sclerosis (MS) is a disease of the central nervous system. It disrupts communication between the brain and other body parts, causing a wide range of symptoms – from extreme fatigue and numbness to impaired vision and paralysis.

The effects of MS vary from patient to patient and can change over time. Symptoms can get better, worse, or even disappear.

Medical advances are helping to reduce the impact of MS and improve patients’ lives.

How might my illness progress?

Most people with MS do not become severely disabled. Two-thirds of patients remain able to walk, though many will need an aid, such as a cane or crutches. Treatments can help manage MS, but in some cases the disease will worsen anyway — regardless of what the patient or their physicians do.

Doctors cannot predict how MS will advance in a given person. In some cases, for instance, patients have long periods of remission – with few or no symptoms — between bouts of illness (known as relapses, attacks, or exacerbations).

Certain factors may play a role in how a person’s illness progresses, according to research. For instance, people who fare better are often those with:

  • few relapses or attacks in the first several years after diagnosis
  • long periods between relapses
  • full recovery from attacks
  • symptoms that are sensory, such as tingling, numbness, or vision problems
  • neurological exam results that are near normal after five years

People whose disease may progress more quickly or severely are often those with:

  • early onset of tremor, coordination problems, or difficulty walking
  • frequent attacks and incomplete recoveries
  • early development of neurological abnormalities, such as blurry vision or muscle weakness
  • more lesions visible on MRI in early stages of illness (MS causes hardened patches of tissue – or lesions – to form in multiple places within the central nervous system)

Complications During Multiple Sclerosis’s Final Stages

If your illness progresses to an advanced stage, you may experience more severe challenges. The good news is that the right supports and treatments can help stave off these problems or reduce their impact.

If your symptoms interfere with your regular activities, a variety of technologies, devices, and home modifications can increase your autonomy. Complex rehabilitation technology (CRT), for example, is considered medically necessary, and can be covered by some health insurance. This can include customized wheelchairs, seat cushions, positioning systems, and head and trunk support systems. Rehabilitation therapists can advise you and your family in this area.

These common symptoms may develop or worsen during the final stages of MS:

  • vision problems, including blurriness or blindness
  • muscle weakness
  • difficulty with coordination and balance
  • problems with walking and standing
  • feelings of numbness, prickling, or pain
  • partial or complete paralysis
  • difficulty speaking
  • tremors
  • dizziness
  • hearing loss
  • problems with concentration, attention, memory, and judgment
  • depression

Other issues may also arise during multiple sclerosis’s final stages, including:

  • This loss of bone density can be caused by lack of weight-bearing exercise such a walking, and by treatment with corticosteroid medication.
  • Pressure sores. These skin wounds are caused by lack of movement or long periods in a bed or wheelchair. If left untreated, they can quickly lead to a severe, whole-body infection.
  • Aspiration pneumonia. Swallowing problems can allow food or liquid into the lungs, causing swelling or infection in the lungs.
  • Severe bladder, kidney, or urinary-tract infections. These can be caused by chronic urinary problems.
  • Bowel problems, such as constipation or incontinence.
  • Pain. This can include a wide range of sensations, from itching, burning, or aching to sharp, shock-like pain.
  • Pulmonary complications. MS can weaken the muscles that control the lungs. Such respiratory issues are the major cause of sickness and death in people in the final stages of MS.
  • Spasticity. This increase in tone in a muscle group causes stiffness and resistance as the muscle is moved. It can impair movement and cause pain and other problems.
  • Lack of appetite or dehydration, which can result from swallowing problems or other effects of MS.
  • Suicide. People with MS are more likely to become depressed and to take their own life, compared to the general population and those with other chronic illnesses. If you think you or your loved one may be depressed, contact your healthcare provider right away.
  • Altered levels of consciousness. The person may become confused, drowsy, or unresponsive due to the effects of MS, their medications, infection, lack of fluids, poor nutrition, or other causes.

Did you know?

More than 2.3 million people worldwide are affected by MS. MS is not contagious. Genetic factors may play a role in who develops the disease.

Other health conditions and MS

Overall, people with MS have more co-existing health conditions — called comorbidities – than are found in the general population. The most common comorbidities among people with MS include high blood pressure, heart disease, diabetes, chronic lung disease, fibromyalgia, depression, anxiety, and bipolar disorder.

These conditions can contribute to a more rapid progression of MS, a reduced quality of life, and a shorter lifespan. Therefore, it’s important to address these comorbidities throughout the course of the person’s illness. Continue seeing your primary care doctor to identify and treat any co-existing conditions. Your neurologist can also help determine whether a problem is caused by your MS or if it’s a separate condition.

How hospice care can help

A person in the final stages of MS — or any other serious illness — can qualify for hospice care if they have a life expectancy of sixth months or less. Hospice focuses on relieving symptoms and enhancing comfort, so the patient can have the best possible quality of life each day. It provides a wide range of physical, social, emotional and spiritual supports to both patients and families.

People can receive hospice care wherever they are living: at home, in a nursing or assisted living facility, or in the hospital. In addition, some hospice organizations (including Samaritan) operate inpatient hospice centers. These are homelike facilities that provide around-the-clock hospice care to patients with more complex needs.

Care is provided by a team of trained professionals and volunteers, with 24/7 access to caregivers as needed. Most health insurance, including Medicare, Medicaid, and private insurance, cover hospice.

When is it time for hospice?

Many people with MS live for years with significant health challenges, and there is no exact way to determine a person’s prognosis. Nevertheless, certain issues can indicate that it’s time to seek hospice support, including:

  • significant breathing difficulties
  • substantial changes in thinking or functioning abilities
  • multiple ICU (intensive care unit) stays and shorter periods of stability
  • hospitalizations that lead to infections
  • urinary tract infections that trigger sepsis (a dangerous response by the body to infection)
  • severe lack of nutrition
  • severe (stage 4) pressure sores
  • other life-threatening complications

If you live in South Jersey and have questions about the final stages of multiple sclerosis or hospice care for your loved one, please call Samaritan at (800) 229-8183.

It is rare, although not impossible, for someone to die from MS itself. However, some people with MS develop disabilities that make them very vulnerable to serious complications which can lead to death.

If an individual reaches this stage, where their disabilities result in severe difficulties which may not respond to treatment and lead to life-threatening complications, they are considered to have end stage MS. Some of the symptoms that can make an individual vulnerable are:

  • very severe bladder and/or bowel problems – which lead to recurrent infections or regular hospitalisation
  • increased susceptibility to respiratory infections – which can lead to repeated bouts of pneumonia
  • swallowing problems – which can cause choking or aspiration pneumonia (where food or fluid enters the lungs)
  • feeding difficulties – which may require a feeding tube or result in severe weight loss
  • difficulties breathing due to weakening of the respiratory muscles
  • losing the ability to speak
  • pressure sores due to immobility – which are at risk of becoming infected
  • developing blood clots due to lack of mobility
  • increased levels of pain
  • mental confusion or disorientation.

All of the above can lead to an individual needing an increasing number of trips to hospital or accident and emergency. If an individual experiences an infection it can put them at risk of developing sepsis, where the body begins to attack its own organs and tissues in response to the infection, which is a potentially life-threatening condition. Some other signs which might indicate end stage MS include physical decline, weight loss and multiple health conditions (comorbidities). A person with end stage MS will often require 24 hour care.

Many of these symptoms are similar to those seen in someone with advanced MS. However, whilst treatment for advanced MS aims to help a person improve medically, in end stage MS the focus shifts to helping a person live to the end of their life with respect, dignity and as comfortably as possible. When a person reaches the end stage of MS it might be appropriate for them to access end of life palliative care services.

Dying Matters is a website that aims to encourage people to talk about dying, death and bereavement with their families and friends and to help people discuss their wishes towards the end of their lives, including where they want to die and their funeral plans.

What are the stages of multiple sclerosis?

Share on PinterestMS affects the central nervous system.

MS primarily affects the central nervous system (CNS), which plays a crucial role in many bodily functions.

As MS can affect so many different bodily functions, each person may experience the disease slightly differently.

There are a few different types and stages of MS, which differ in how they progress.

Clinically isolated syndrome (CIS)

CIS is the first episode of MS symptoms that people experience, and it results from inflammation and damage to the myelin sheath. The National MS Society note that doctors will only define the episode as being CIS if it lasts at least a day.

In some cases, a person can experience CIS and not have MS. To diagnose MS, doctors will use magnetic resonance imaging (MRI) to look for active lesions or evidence of past lesions in a person’s brain.

In people who go on to receive an MS diagnosis, the early treatment of CIS may help delay the full onset of the disease.

Learn more about the early symptoms of MS.

Relapsing-remitting MS (RRMS)

Most people with MS have relapsing-remitting MS (RRMS). The first signs of the disease will typically appear before the age of 30 years.

A person with RRMS will experience attacks of new or worsening symptoms. After each attack, they will have an extended period in which their symptoms improve or disappear until the next relapse.

In some cases, symptoms become permanent and only get slightly better during remission.

New lesions often appear on the brain after a relapse. However, they may also appear without causing apparent symptoms.

The severity of symptoms can vary depending on the extent and location of the nerve damage. Remission time can range from about a week to many years.

During the remission phase, the disease will show no signs of progression.

Primary progressive MS (PPMS)

Primary progressive MS (PPMS) is less common than RRMS. The National Institute of Neurological Disorders and Stroke state that this type of MS occurs most commonly after the age of 40 years.

People with PPMS have symptoms that gradually get worse over time. They may not have attacks or a sudden onset of symptoms, but they tend to experience symptoms throughout their life without recovery or remission. The severity of these symptoms can vary.

Some treatments for RRMS are less effective in treating the symptoms of PPMS.

Secondary progressive MS (SPMS)

After a person has lived with RRMS for many years, the disease may eventually progress to SPMS.

When this occurs, symptoms will gradually become more severe without any further distinction between attacks and remission.

Multiple sclerosis (MS) is different for everyone who has it. The symptoms it causes and when they flare up vary not only between people but also throughout one person’s life. This means it can be hard for doctors to diagnose someone with the condition. They might say you “probably” or “possibly” have MS.

Your diagnosis is based on the symptoms you have, how and when they flare up or improve, which of your body’s functions give you trouble, and your test results. There’s no way to predict how your condition will change throughout your life. It may take time, but as your doctor gets more clues about the type of MS you have, you can have a clearer idea of how it will affect you in the coming years.

The way the disease changes and gets worse is different for each of the three types of MS:

  • Relapsing-remitting MS: People with this type have attacks when their symptoms get worse, called relapses, followed by full, partial, or no recovery. These flares seem to change over several days to weeks. Recovery from an attack takes weeks, sometimes months, but symptoms don’t get worse during this time. Most people have this type when they’re first diagnosed with MS.
  • Secondary-progressive MS: People who get this type usually start with relapsing-remitting MS. Over time, symptoms stop coming and going and begin getting steadily worse. The change may happen shortly after MS symptoms appear, or it may take years or decades.
  • Primary-progressive MS: In this type, symptoms gradually get worse without any obvious relapses or remissions. About 15% of all people with MS have this form, but it’s most common type for people diagnosed after age 40.

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