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MS Progression time lapse

What is Secondary Progressive MS. I hope researchers read this as I cannot see a way of contacting them. It is intended to be informative and is not intended as a criticism of their fantastic work and dedication.

It seems to me that Progressive MS is looked at as a steadily progressive deterioration over a given time. However, with me who was diagnosed some 35 years ago, it has not been a steady progression.

Every five years or so I suffer a precipice when the MS has a significant downturn and then for a further five years there is slow progression until the next precipice when another significant downturn occurs. Whilst the progressive research is on the road to diagnosis and identification what could possibly be causing the sudden downturn every five years or so?

I had to revert to a wheelchair about two years ago and that I regard as a precipice and the MS progresses. 2018 might be significant, me thinks, cure or bust. An awful lot can happen in three years and I am determined to do all I can to get out of this wheelchair and get this MS to surrender.(With the help of the specialists)

It is not remission and relapsing form of MS because there is no respite.

This post is not cheerful but there are people far worse off than us MSESSORS but it should not be a reason for complacency.

Thats enough of my meandering, back to painting. I’m using water mixable oil paint. Anyone else out there painting ?

If I paint one a day for the next three years I will have over 1000 images. Who said size doesn’t matter.

Signing off

Artful

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I’m not painting. I’m writing code. :slight_smile: I wish I could paint. It must be theraputic.

I know what you mean about the every five years. Mine seems to be about four. I think that you have to do everything you possibly can to combat this disease. Lifestyle, diet, supplemenation, DMDs.

Sorry, I can’t offer you any pearls of wisdom. Good luck with it and enjoy the art.

Adrian. :slight_smile:

I don’t think this board is frequented by “researchers”, and if it is, it’s quite unlikely they will reveal themselves by replying openly, and I can’t really say I’d blame them. Professional ethics may well restrain them from commenting on individual cases, and even if it didn’t, coming here and admitting to being a professional MS researcher would be like volunteering for the stocks - they’d become the scapegoat for anything anyone didn’t understand or was unhappy about in the field of MS research, which would hardly be fair. So I fully understand why we don’t get anyone admitting: “I’m a research neurologist…”

Anyway, to your situation, and have you actually been diagnosed with SPMS?

As it sounds to me as if you’ve had a succession of relapses, which have left you progressively more disabled This is not incompatible with still being RRMS. It’s a common misconception that RRMS means “being fine” in remission, but it too is a progressive disease, as contradictory as that may sound.

Recovery from early relapses tends to be good - although there are exceptions, even to that, as some unlucky people suffer profound and irreversible disability, right from their very first one.

But in general, recovery is good at first, but gets less effective as time goes on - probably as the accrued damage gradually overwhelms the body’s ability to repair it.

I always think of it as a bit like the old anecdote about the painting of the Forth Bridge - that it was NEVER finished, because as fast as they could paint it, the first bit needed painting again. I think that is no longer the case these days, as they have more hi-tech paint, but how it used to be is still a good analogy for what MS repairs are like. You can think of them as forever trying to touch-up the paint, while all the time, more bits are flaking off. Eventually, it becomes a losing battle, as bits are coming off faster than it’s possible to repaint them, leaving the painters overwhelmed, and bits of the structure permanently exposed (i.e. those parts of the CNS that don’t get remyelinated, and thereafter don’t work properly).

Most people with RRMS have some degree of permanent disability, ranging from mild to severe - especially after the first few relapses.

Failure to recover from a relapse is not necessarily indicative of SPMS. Not all relapses are reversible - increasingly so as time goes on.

To complicate things further, there’s a new type of MS (well, probably always there, but only recently formally recognised) called Progressive Relapsing MS. This is currently considered to be the rarest of all types of MS, and is basically a progressive type, but with relapses superimposed on it. This could correspond to what you are experiencing, where you have a relatively steady progression, for the most part, but a few more dramatic episodes superimposed upon it, from which you haven’t recovered well.

I also think it’s important to remember the transition from RRMS to SPMS is more gradual than the flicking of a switch. You don’t one day have your last ever relapse, and the next day, you are SPMS.

For a time, you may have characteristics of both - i.e. relapses tending to taper off, but you still get some.

Tina

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