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The use of the word Progressive

Hi All,

Hope you are all doing as well as you can?

Sorry if I am being a bit thick here? Won’t be the first time!

I keep hearing people talk about “Progressive MS”. Now I know I have Primary Progressive MS. However, I thought they were all progressive? I know the differences between the different types, but surely they are all progressive? The way I hear the professionals speak it makes me think they don’t see RRMS and SPMS as progressive?

What do others think?

ps look at my second thread if you are interested too?

Night

Anne

x

Sorry Anne, but I don’t agree with this interpretation.

I understood that RRMS meant having distinct ‘attacks’ - during which some progression in the condition would occur. However, I’ve heard of the time elapsing between these ‘attacks’ (remissions’ during which there is no progression) being anywhere between 3 months and 30+ years!

A percentage of people that are initially diagnosed with RRMS go on to develop SPMS - during which deterioration becomes continual - but may be in very small steps. Some people do not go on to SPMS at all.

I’d question these ‘professionals’ that are suggesting SPMS is NOT progressive and ask for an explanation as to why they think that ?!!

Dom

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Hi Anne, both PPMS and SPMS are progressive, in that symptoms do not go into remission and continue to progress…although the rate of progression will vary from person to person.

RRMS is not considered progressive as Dom points out, there are relapses and there can be complete recovery between relapses, although there can be permanent damage as well. When it gets to a stage where there are no remissions but continuous progression it is SPMS.

It is confusing!

Pat xx

I think I have PPMS with overlying RRMS . Some idiot neuro reckoned that wasn’t possible but after researching it definately is.

As for all MS being progressive, it probably is, many RRMS turn into SPMS or PPMS as they get older.

Also as you get older other things complicate what is what including arthritus and rhematism.

And dont forget gout, MS and gout are supposed to be mutually exclusive, they are not , just rare !

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Not sure where you get your info from nw, but it is NOT possible to have RRMS and PPMS.

PPMS is progressive from the start and there are no remissions.

RRMS can become progressive without remissions; it is then called SPMS.

There is a type called PRMS, Progressive Relapsing MS, which I believe is quite rare and only identified recently.

Any good MS website will tell you the same.

Pat xx

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That is what Im referring to !

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Brilliant video Jackie! I actually learnt some stuff too!

Thanks for posting,

Pat xx

Thank you Jackie, very interesting… M

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That was interesting Jackie, thank you.

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Thank you Jackie, that was very interesting …as Pat said…something new!

Nina x

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Jackie,

I am so glad I wrote that first thread! Thankyou so much for that video, very interesting. It sorted it out in my mind.

AS I have read before, they think PPMS is a different disease than the others.

So in fact, peeps, we are the “Creme de la Creme”

I always knew it!!

Enjoy your days,

Anne

x

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Indeed we are Anne! The creme de la creme of MS World!

Pat xx

No doubt PPMS is the most prestigious flavour and let’s face it remission is just for wimps.

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My dad often told me I was special, don’t think he knew it was true…

Cath x

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I`m even more special!

My diagnosis of PPMS turned out to be wrong and I have HSP, which affects just 3 in 100,00 people.

Wish I wasnt so special!

luv Pollxx

But I do like being friends with you PPMSers here!

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I must also be real special…this ppms malarkey decided to come and live with me when I was 30, did take a couple of years monitoring till it was DX, and yet apparently ppms is supposed to happen later in life!

All these problems started a couple of months after my Dad died suddenly, so I often wonder it trauma triggers it.

All in all I am a complete ‘odd ball’ lol

Pam D

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I’m diagnosed with PPMS, have kicked up and now (after a detour to London) I’m taking a DMD (I think only because I selected a ‘low’ risk option) so it’s not a definite RRMS either and truthfully, I’m beginning to think that PRMS is a possibility now.

Sonia x

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I was considered to have been “PPMS” for the first 13 years of my MS. Then I suddenly had flares, resulting in temporary symptoms, e.g. speech slurring. So now I have the label “progressive relapsing”, which only around 5% of people with MS are considered to have.

Personally, I find the categorisation of MS unhelpful and distracting.

I wrote to the MS Trust, and they said:

"I suspect that the way MS is currently defined may change in the future as neurologists are already beginning to talk about MS in different ways, as detailed below:

Clinically isolated syndrome – not active OR active (ie relapsing remitting MS)

Relapsing remitting MS – active (experiencing relapses or subclinical activity as seen by MRI) OR not active

Then with the progressive forms, rather than splitting them into SPMS and PPMS they are beginning to talk about 4 clinical types:

  1. Progressive MS – active with progression – which is where your diagnosis of progressive relapsing would fit if you are having relapses but are still also experiencing progression, this description would also fit an individual with SPMS who was continuing to have relapses along with ongoing progression
  2. Progressive MS – active no progression
  3. Progressive MS – not active with progression
  4. Progressive MS – not active and with no progression (stable)."

I then wrote to the MS Society, and they said:

"The neurologists [with whom they consulted] all said that now we have disease modifying therapies (DMTs) it’s more important to classify MS in terms of:

  1. how active it is (ie, how many relapses, how many new lesions are appearing on the brain)
  2. whether someone’s MS has relapses or not (if they do then DMTs can help)."

So my understanding now is that, regardless of progression, you need to ask yourself/your neurologist if you’re having flares/relapses and whether DMTs would be of help to you or not.

(I’ve decided they probably wouldn’t help me much, and I didn’t think much of the potential side effects.)

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Good Lord it’s confusing when you have Progressive MS Brain… Not active, no progression, no concentration, easily confused!

Thanks for info though. Interesting that they are changing the terms.

Pat xx

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It is confusing - but not even the neurologists fully understand MS yet - why it happens, how it happens - especially progression! So don’t blame yourself if it all seems clear as mud!

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