Last reply 1 week ago
Secondary progressive ms

Hi everyone. I just wanted some advice on secondary progressive. I can’t believe it I got diagnosed with ms – relapsing remitting 15 months ago,no treatments and then Friday I get told by the neurologist I have lots of lesions in my brain,brain stem and spine. I just feel devastated. I feel this could of been prevented happening so quickly if i had treatment when got diagnosed. Just wanted to know how do you cope with this stage?
Thankyou Anna 😭

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mamawals
1 week ago

I’m confused. We’re you diagnosed with secondary progressive? You can have lots of lesions with very active RRMS.


grandma
1 week ago

@lushy things have moved fast for you. I’m surprised you weren’t offered a DMT 15 months ago, though as a rule you will be offered a stronger one if you’ve been dxd with spms. Mine has become spms (they think) after 23 years, but they did tell me that would happen after 10-15 so not complaining, I look at it that I had 8 years extra. Like all ms dxd, it’s not the end of the world, you just have to tweak things to suit abs you can pretty much carry on as usual, I’m 62 , still swim, caravan, go shopping etc., so there is still life, it’s what you make it.👏😜✌🏼


lushy
1 week ago

Thankyou for replying. I’m confused too they said highly active MS then Friday the neurologist said secondary.
I’m only 33 and this is all to much to soon. I’ve only just accepted I have MS.


rotherhamdave
1 week ago

I have secondary n it is tough going. U just have to cope I guess cos there’s nothing out there for it. It doesn’t get me down at all. Frustrated mainly cos I can’t do what I want to do so I just get on wi life as there’s always someone out there in a worser state. Been nearly 5 years now since my diagnosis. Not on any medication n I don’t have replases which is good.

You’ll be ok. It It is hard to take at first but it gets easier


peterfrancis
1 week ago

@lushy

Hi

Like @rotherhamdave says SPMS is tough going and then some. You just have to accept it and learn to understand your limits in every aspect of what was once normal everyday life.


lushy
1 week ago

Thankyou so much for all your replies. Really good advice ,onwards and upwards from now on. Your right I need to accept that what was normal isn’t now and learn to deal with it. 🙂👍🙂


lightning87
1 week ago

I didn’t think number of lesions equated to SPMS diagnosis. Have you had any further symptoms to make you think it has developed?

SPMS is still a slow progression (I think) so don’t think your life is limited. Give yourself some time to be devastated, you don’t have to accept it fully right now. It’s still new and fresh, over time it will get easier.

I remember when I got told I had lesions after my first MRI, I couldn’t believe it. You need time to cry, be sad, be angry and then pick yourself up. It’s not a race, you may have to think about things more but don’t let it stop you.

All the best x

I was diagnosed w RR for over 20 yrs before transitioning to SP. During that time I had a MRI that said ‘several lesions too numorous to count’. So I agree that the number of lesions doesn’t determine the type or stage of MS. If its been less than a year since your orginal diagnosis it may be Primary Progressive. At any rate, I would recommend you get a second opinion.


stumbler
1 week ago

@lushy , there appears to be some misconceptions about MS and the different variants.

All MS types are Progressive.

Relapsing/Remitting MS (RRMS)is characterised by periods of relapse, followed by periods of recovery (remission).

Secondary Progressive MS (SPMS) is a follow on from RRMS, when there are no periods of recovery. There may be no defined relapses.

Primary Progressive MS (PPMS) is a variant of MS, which has no periods of recovery from the start.

In the UK, there are presently no treatments available for PPMS or SPMS.


mamawals
1 week ago

It sounds you need to have a discussion with your neurologist. What is your diagnosis (RRMS or SPMS) and why? If there’s any doubt, you want to be RRMS so you can at least try a treatment until diagnosis of SPMS is definitive. Whatever the diagnosis it is not terminal! So keep your chin up and keep moving forward. Good luck!

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