What Is The Last Stage Of Ms? How Do You Prepare Your Family For Advanced Ms?

Question

Asked by imckelvin

What Is The Last Stage Of Ms? How Do You Prepare Your Family For Advanced Ms?

Answer

Multiple sclerosis has four main disease courses:

  • relapsing-remitting MS (RRMS) where acute attacks occur with partial recovery
  • secondary-progressive MS (SPMS) where relapsing MS transitions into a slowly progressive course, without significant attacks or recovery
  • primary-progressive MS (PPMS) where the disease is slowly progressive from onset
  • progressive-relapsing MS (PRMS) where the disease begins progressive but does have minor relapses

As MS progresses and significant disability accumulates, the disease can become quite debilitating. In very advanced cases, patients may need access to palliative care.

The National MS Society offers helpful information for Living with Advanced MS. Download and print out their booklet - Caring for Loved Ones with Advanced MS - A Guide for Families. The MS Society in the UK also offers information for those severely affect by MS.

Community member, Ann, shares the following information regarding 'end stage MS':

Signs: While there is no definitive timeline and not everyone will experience each each symptoms/problems, the following are some of the things which may happen with 'end stage MS.'

1. Breathing: shallow and ragged sounding, labored, many bouts of pneumonia

2. Swallowing problems that cause choking on food, fluids, saliva (and this can cause the person to inhale (aspirate) of food and fluid into lungs which in turn causes "aspiration pneumonia"

3. Worsening bladder and bowel problems, having a permanent catheter.

4. Pain starts or becomes much worse, and the person needs strong pain meds, such as morphine or fentanyl patches. There can be very dangerous drug interactions with the MS drugs, anti-depressants, sleeping pills that can slow the heart and breathing to life threatening levels. Drug addiction can result as well.

5. The drugs and/or the MS make person more disoriented, lack of focus, crying out in the night, not sleeping through the night, needing more and more assistance from you because they are uncomfortable, need a drink, repositioning, more pain medication.

6. Changes in mental attitude, worsening depression, forgetful, worried, anxious, confused...

7. Having a feeding tube.

8. Needing a respirator.

9. Needing 24 hour care.

10. Many more trips to the emergency room and hospital stays for any of the above problems, and/or infections, low electrolytes, low blood oxygen, low pulse, and more.

Thank you to the many community members who have shared their concerns, questions, experiences, and advice in the comments below. Special thanks go to Ann for all of the information and resources shared.