Advanced MS

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. 

• 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.

• 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 your ability to carry out tasks such as eating or driniking 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)
• tremor.

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.

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.

If you have advanced MS, you are likely to be very familiar with your usual symptoms and have considerable experience with how to treat and manage them. This doesn't mean that there's nothing more that can be done. Treatment options change, and your symptoms may change over time. Keep communicating with your health team to ensure you have the best options in place for you.

Aim to develop a strong relationship with your GP, who is likely to be managing your symptoms and ongoing medication. Try and see the same person each time, where possible. Explore the clinic options at your GP service. Your GP should be able to refer you to local services such as continence services, wheelchair services, rehabilitation, a respiratory clinic or general health and social care.

You may not necessarily see a neurologist on a regular basis if you have advanced MS that is progressive. If your MS is advanced but you still have relapses, then you could still be monitored by a neurologist and taking a disease modifying drug. Either way, you should ideally be offered an annual review, according to the NICE clinical guidelines on the management of MS.

Occupational therapists can be very useful to people with advanced MS. They may be able to make home visits to assess your needs, and suggest or provide equipment or strategies to help with everyday life. These might include ramps, hoists, and other adaptations to make life easier.

Bladder and bowel problems are common in advanced MS and can complicate your care needs. A continence service can help you with techniques or medication to manage your bladder or bowel issues, and provide equipment such as catheters or pads.

You may have found that advanced MS affects your chest, mouth, neck and throat. This can have knock-on effects on the strength of your breathing or speech, or in the co-ordination of eating and drinking. A speech and language therapist can advise and assist with all of these aspects.

If you don't already have an advance care plan in place, this is something you might like to consider discussing with a health professional involved in your care. Advance care planning (ACP) is a process through which you can think about how you would like to be cared for in the future and a chance to talk through what might happen and what your treatment options might be. It's also a way of making your wishes known if you're ever in the position where you're unable to decide for yourself and you need someone else to do it on your behalf.

Advance care planning can help you prioritise what's important to you and make choices that help you maintain control over your life. It's also a way to get your voice heard if you feel very strongly about something, such as a treatment you know you wouldn't want to have.

Having an advance care plan in place means that it's more likely you'll receive the care you want, in the place of your choice.

• MS Trust Advanced MS Champions programme - to provide expert guidance and coordinated care for people with advanced MS
• Talking advanced MS and Advanced MS champions - in this podcast episode we talk about what life with advanced MS is like and what MS champions do to help
• Advance care planning
• Thinking Ahead: setting out your wishes for your future care and treatment - a guide to advance care planning from the MS Trust