End stage

End stage - I can"t help wondering about the terminology and effect on others in the early stages of MS. I am used to being set aside, that there is no cure - get used to it scenario. But as a positive person who wanted a quality life brought up to work and make do, I still felt end stage to be rather remote. My first relapse recorded in 1979 and living with MS for 36 years, SPMS since 2008, I am having to re-evaluate.

With cognitive function problems/deficit and bowel issues, today I wonder who was responsible for fitting a tap to my bottom, also finding myself with the feeling that end stage really means - end stage. The list of medics is getting longer, nothing is cut and dried anymore and life becomes more and more limited. My mantra - I spit in the face of adversity - will have to be replaced, as I now reflect on my future. I am grateful to have the rock solid support of my husband who also has had to cope with the many symptoms several of which which are invisible.

" Life doesn’t get tougher than this", a quote today from the Voice promotions - my answer - the hell is does.

My main recommendation to others is that knowledge is power, but we don’t have to like it.


I feel for you Moira while you ponder this inevitable outcome.

We are all told in the early stages that MS doesn’t kill you, people die with MS not of MS. And yet the EDSS has stage 10 as “death due to MS”.

So it seems there is an ‘end stage’ and potential death.

36 years is a very long time to have been living with progressive disability. And reaching milestones such as inability to manage bladder and bowel independently and learning how to live with cognitive deficits is hard.

You are absolutely right, life is tough with MS. Worsening disability is extraordinarily difficult.

I don’t know whether it makes one feel better to know that the disease modifying drugs are massively improving the outlook for those people who are now experiencing their first symptoms. As time goes by, perhaps there will eventually be no ‘end stage’.

Maybe one day there will be a real and lasting cure. I hope so.



Can’t say a lot else. I agree with all you have said. Sending hugs Anne x

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Hi Hun.

I get you have gone through the ‘spit in the face of adversity’ stage and have battled strongly.

I admire your pluck, but I can tell you’re not ready to give up completely.

I have a very similar incurable condition to MS and am very dependent on hubby and carer’s.

Hubby was my only carer for 11 years, until we decided to get outside help.

It was difficult to allow them into our home and lives.

But almost 5 years on, we definitely know it was the best thing we did.

Our lives would be much harder if we still struggled on between us.

Do you think carers would help you?

I pay for this with Direct Payments.

Luv Pollx

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Chin up. You obviously have seen it all after 36 years with MS. I just think that here in UK we need more specialists to deal specifically with MS a condition which now seems to be more and more common.

I have been diagnosed about 6 months back but apart from an affirmative diagnosis and numerous scripts from my GP for pain relief I have had little other support. Am still trying to hold down a full-time job but it is now becoming more and more difficult for me with chronic back pain, stiffness, impaired walking and more recent stabbing pains in my shoulders. I am trying to get an appointment with a MS nurse whom apparently are invalauble.

Sorry as an amateur patient of MS I can not be more positive. Keep fighting and get all the support you can; you deserve it and lets hope you are far from the “end stage”.

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How you doing Moira. ? I read this post and replies and then realised it’s from a few months ago, when I saw my own reply!

Hope you’re still hanging in there hun!

There will be an end stage for all of us eventually, but it’s a bit differen when are already living with an incurable condition.

Love Poll x