This thing everyone says, "MS does not kill you, the complications do", is a phrase I would like to see eliminated from MS talks or at least put in perspective. MS can kill you because at the end stage, it is shutting down every single thing we need to live:  eating, drinking water, breathing, being able to eliminate. Pain, vision and speaking problems all make end stage MS an isolating and scary time for the person and their loved ones. It doesn't have to be that way if you take some steps now.   While most MS does not get to this stage and the person will have a normal life expectancy, for those have been told they are at "end stage" or have "advanced" or "severe" MS, they need info. If you've been told this, take notice, for it is serious for you.    Signs: while there is no definitive timeline and not everyone will have all of these things, what you can expect at "end stage MS" ( in addition to all the typical MS symptoms of stiffness, vision, speech problems,  being bed or wheelchair bound) is new or much worsening problems with: 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  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. (I recommend that all caregivers and loved ones learn to take pulse and listen to heart and lungs)    I know some with Primary Progressive go on for many years while others have died within a year of the diagnosis. Over time, some people who had one form, are reevaluated to having Primary. As everyone comments, MS affects people differently, even when it has same diagnosis of form. This is partly because some are not diagnosed correctly initially and partly because of the individual nature of MS.    I am very happy that most people do not get this form of MS and do not end up dying from MS. However, to gloss over the reality for those who have a "end stage" or  "severe" and "advanced" of MS is a disservice to them. They need info so they can decide for themselves how much they want to prepare for death. Most people just keep going on as usual where others want to have certain talks or have certain experiences while they still can. Not to look at this or talk about the end, may deprive the person of the extra care, such as more assistance or hospice, that may be needed to make them as comfortable as possible.    No one wants to face or dwell on this, but the reason you have to look at this info is because if you or a loved one has "advanced" or "end stage MS", you will need a strong advocate and the caregivers and loved ones need learn how to make that person more comfortable, spend more time with them maybe looking at photos, listening to music, bringing in a pet, or reading a book aloud, things from the outdoors, such as fall leaves, or beach sand, or a wildflower, things they have not seen, smelled or touched in many months or even years. Or maybe they want to take a trip even if it will be hard to do, or do something wild and crazy!   And you'll be amazed at what you can learn about life from the loved one with MS.    Many times, the person with MS has come much farther in their journey of acceptance than those around him or her, and they may welcome extra attention. Some may not, let the person guide you, but try…even if the person resists at first. He or she may already feel "like a burden" and not want to "impose". But this can be time well spent that brings meaning and reflection upon a life together, the present moment, and the future, for both the loved ones and the person with MS.    I am not  in the medical profession, just a person who was there while a loved one declined and passed away from MS after a 10 year battle with Primary Progressive. I hope this will be of help to those who are wondering what to expect and what they can do to help.    I wish you all strength and compassion for yourselves, your loved ones and caregivers on this most difficult journey.   I think you will find answers to more of your questions at these links.    http://www.nationalmssociety.org/about-multiple-sclerosis/living-with-advanced-ms/index.aspx   On this page, please find the document listed below the main article and video, called "Advanced MS: a guide for families" .   Print it off and refer to it often as things change.     for those in the UK, there is a similar link: http://www.mssociety.org.uk/downloads/MS_Essentials_16_Support_for_people_severely_affected_by_MS_-_web.8df5f599.pdf   Read both, as each one has important info.   to read more about Palliative care (things to make the person feel better, but do not count as a treatment or cure) :   http://www.mssociety.org.uk/about_ms/care_and_support/support_for_people_severely_affected_by_ms/palliative_care.html