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Developing primary progressive?

Just saw this on a BBC article that someone quoted on here. It was taken from a BBC website recently,

'‘After about 10 years, around half of people with relapsing remitting MS go on to develop secondary progressive MS’

  • Since my diagnosis I have researched MS. ALOT. and have never seen this before. Is this true? Tbh, I’ve been positive since diagnosis, but this has depressed me massively.

Here is the article: http://www.bbc.co.uk/news/health-23327835

you cant ‘go on’ to primary progressive ms, ppms starts as that and doesnt change to another type,

relapsing remitting ,as the name suggests, starts with relapses and remissions,and can move on to secondary progressive ms,but not always,mine did after 13 years,and although i am classed as spms,i still have relapses.

I’m assuming your post title was just a typo, because, as Jaki says, you can’t “go on” to primary progressive, and that’s not what the article says either.

Most people with RRMS do eventually go on to become secondary progressive - it could be described as the “normal” course of the disease, so I’m very surprised you haven’t met that in your research 'til now. Are you relatively recently diagnosed?

I don’t think it’s any reason to be less positive. Like all types of MS, it varies hugely from person to person. Someone with secondary progressive will not inevitably be more sick or disabled than someone with RRMS - it’s just a label.

And as relapses tend to become less frequent, or stop altogether, relief from the uncertainty of never knowing when the next one will be might even be an advantage. You are less likely to wake up with something not working that was perfectly alright last night.

Tina

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Yeah I’ve only been diagnosed in the last month! n yeah, sorry for the typo! Glad you all worked it out!

PMCR87 - I hope you are not to be too distressed over the article, reading things like that brings the future into sharp focus which can be frightening. I am not certain about the labels, particularly as the new treatments can stop the relapses and thefore to some extent move many of us to secondary progressive because we no longer see the improvements that follow. I have seen this first hand as someone who has Tysabri infusions at the same time as me has followed this route, and she has has seen a very slight deterioration in cognitive function only. I am sure I will be next for the “upgrade”. Nothing to fear but fear itself!. Keep well, Peter

I do not understand the comments about new treatments “moving” anyone to secondary progressive. I’m confident that is not the case, and that they would not be offered if they were in any way hastening progression. Secondary progressive is not merely RRMS without relapses, but a move to a different model of progression. So taking a drug that stops or reduces relapses does NOT mean it has “moved you” to secondary progressive.

For pmcr87: if you’ve only been diagnosed a month, in all probability, it will be many years before secondary progressive is something you even need to think about. And who knows what developments there may have been by then?

Tina

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I think the definition for secondary progression is 6 months steady decline without relapses. The point I was making is if you remove the relapses by the use of DMD’s, as most of us are getting worse gradually over time there will be the possibility that our symptoms fit that category more closely than Relapsing remitting,a case of the law of unintended consequence. Just what I have witnessed from our small group taking Tysabri. I havent had a relapse for over 2 years, but I certaintly haven’t got any better. Walking is the same but thinking/talking/tiping (sic!) has got slowly worse. As the NHS is strapped for cash and NICE guidelines don’t recognise Tysabri as a treatment for secondary progression, the change of diagnosis could save the hospital 25k a year per person, now there’s a thought!. Peter