Symptoms and Complications of Advanced Multiple Sclerosis (MS)

Advanced multiple sclerosis (MS) refers to a person who is severely debilitated by their symptoms. Most are in a wheelchair or are bedbound, and are dependent on a home caregiver, family member, or a nursing home for their personal and healthcare needs. While there are rare cases of people who develop MS and progress rapidly, the vast majority of people with advanced MS have had the disease for years.

Symptoms

The symptoms in a person with advanced MS are similar to those in a person in the early stages of MS; however, they tend to be much more severe, and there are a lot more of them. In addition, there are a few symptoms that tend to be unique to advanced MS— such as problems swallowing and difficulty speaking.

Here is a comprehensive (although not exhaustive) list of symptoms that may be present in advanced MS:

• An overactive (more common) or underactive (less common) bladder
• Severe constipation or fecal incontinence (involuntary loss of bowel control)
• Significant pain associated with muscle contractures and spasms
• Tremor (uncontrollable shaking)
• Significant fatigue (mental and physical exhaustion)
• Problems swallowing, poor cough reflex, and difficulty clearing mouth/throat phlegm
• Speech problems, making it hard to speak and be understood by others
• Poor nutrition and/or hydration due to many factors (e.g., appetite decline, fatigue, and problems swallowing)
• Cognitive decline (e.g., memory loss, poor concentration and attention, and difficulties solving problems or making decisions)
• Altered mood states, such as euphoria, disinhibition, or anger
• Altered level of consciousness, including a persistent vegetative state

Complications

Unfortunately, the potential symptoms of advanced MS may lead to a variety of complications—a vicious cascade of events that can be challenging to break.

Some of these complications include:

Osteoporosis

Osteoporosis is a disease when bones become so weak that they are prone to fracturing (breaking). In fact, there are no symptoms of osteoporosis until a bone is fractured.

Many factors may increase a person's risk for developing osteoporosis—such as the medications used to treat MS symptoms and being sedentary and/or malnourished. Having MS itself also increases a person's risk.

Pressure Sores

Pressure sores, also called pressure ulcers or bedsores, develop from unrelieved pressure from sitting in a wheelchair or lying in a bed for extended periods of time. The pressure ultimately impairs blood flow with subsequent oxygen and nutrient deprivation to the skin and underlying tissues.

Pressure sores can range in severity from mild reddening of the skin to deep, wounds that expose muscle or bone. Pain and/or fever may or may not be present.

Besides MS-related immobility, poor nutrition, depression, decreased pain sensation, aging skin, and the use of corticosteroid therapy can increase a person's chances for developing pressure sores.

Aspiration Pneumonia

Aspiration pneumonia is an infection of the lung that results from problems swallowing. Symptoms of aspiration pneumonia may include a cough with or without mucus, fever, wheezing, and/or breathing difficulties.

A weakening of the respiratory and swallowing muscles in advanced MS are risk factors for developing aspiration pneumonia. Moreover, having a suppressed immune system from taking certain MS medications can make a person more prone to this lung infection. Medications used to treat other MS symptoms may inadvertently cause sedation, which can impair chewing, and thus lead to food being aspirated (going into a person's airways).

Urinary Tract Infection

Bladder issues, especially when nerve problems make it difficult for the bladder to store urine (called an overactive or spastic bladder), are very common and can be severe in advanced MS.

While bladder problems alone make a person more prone to urinary tract infections, catheterization, especially indwelling catheters, also increase a person's chances of developing a urinary tract infection.

Typical symptoms of a urinary tract infection include:

• Burning sensation when urinating
• Needing to urinate frequently and urgently
• Blood in the urine
• Lower abdominal discomfort

Proactive Management

If you have MS, especially if you have been recently diagnosed, it's normal to feel worried or scared at the possibility of one day having advanced MS and thus, "dying from MS."

Take a deep breath, though, and keep in mind that many people with MS never reach the advanced stage. Either their disease does not progress to this stage, or they die from a more common health condition, like heart disease or stroke, prior to the MS becoming this severely debilitating.

This includes:

• Taking your MS disease-modifying medication
• Keeping in close touch with your neurologist regarding new or bothersome symptoms
• Exercising daily
• Eating a well-balanced, nutritious diet
• Managing your stress healthily (for example, consider seeing a therapist for cognitive-behavioral therapy)
• Seeing your primary care physician regularly for vaccinations and other preventive healthcare measures

A Word From Verywell

Coping with or caring for someone with advanced MS can be very challenging, both physically and emotionally. Please reach out to your MS healthcare team, family and friends, and organizations like the National MS Society for support and tools to assist you during this trying time.