Advanced MS is a description of the level of the burden and difficulties that MS is causing you, rather than the type of MS you have.
Your MS may be advanced if you:
- have multiple MS symptoms at the same time which are ongoing
- are dependent on others for some or all of your care and support needs
- have significant physical impairment.
Some people when experiencing a relapse may be affected very severely, with symptoms and disability suddenly getting much worse. As the relapse resolves symptoms typically improve either partially or completely; whereas the worsening of MS to the point where it might be considered 'advanced' typically happens more gradually and the symptoms don't go away. For some people this worsening of symptoms can happen rapidly.
Symptoms of advanced MS may include:
- serious bladder and/or bowel problems - you may require permanent catheterisation
- walking difficulties due to mobility or balance problems - you may require the use of walking aids or a wheelchair most of the time
- weakness - you may find it difficult to bear your own weight when standing, or your grip may be affected which could affect tasks such as your ability to eat or drink unaided
- breathing problems
- spasticity and/or spasms - which may affect your walking
- severe pain
- speech and/or swallowing difficulties - which may limit your ability to communicate or increase your risk of choking
- lack of coordination (ataxia)
Many of these symptoms are the same as you can get at other stages of MS. However, with advanced MS you are likely to have many of these symptoms all at the same time. The symptoms can also be difficult to treat. Specialist rehabilative palliative care may be useful for a short period of time if some symptoms are proving particularly difficult to treat, for example if you have severe pain which isn't responding well to treatment.
If you have advanced MS, respite care may be appropriate to give you, and the family members or carers who look after you, a break and some time to yourselves and a change of environment.
Advanced MS versus progressive MS
Progressive MS is defined as an increase in disability over time. People with progressive MS may be able to walk independently, work and need minimal help to carry out most daily activities. So a person with progressive MS may not necessarily have advanced MS, although some will. People with advanced MS typically need greater assistance to carry out routine tasks, and need support from a range of health and social care services.
Many of the symptoms seen in advanced MS are similar to those seen in a person with end stage MS. However the treatment is different. Treatment for advanced MS aims to help a person to improve medically, whereas with 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.
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Palliative care aims to improve the quality of life for those with severe or complex health needs.
People with advanced MS miss out on palliative care.
A 2015 report by Marie Curie suggests that people with neurological conditions including MS are missing out on care that could make a real difference to quality of life.