Forum

Secondary progressive, the same but worse?

Hi people. I am confused at the moment. and what’s new I hear you all say! I was told by my neurologist last month, that I probably have secondary progressive MS (SPMS). Who else has been told this?

I am feeling confused as I am not sure if I’m feeling more brain fuzzy than usual due to being told this news, or do people think it is part of SPMS?

I could do with some information please.

Sue 10

Hi

My initial diagnosis was secondary progressive.

As with all MS it is hugely variable from one person to another.

My main issues are with mobility although I have some other stuff going on as well. My brain is fuzzy but that is probably due as much to OGS (Old Git Syndrome) as MS. But that doesn’t mean to say brain fuzziness is not a symptom for other people.

A diagnosis of MS can take some getting used to, I found the explanatory leaflets from the MS Society helpful. http://www.mssociety.org.uk/ms-support/publications-and-library

Good Luck!

Anne x

I’m off to see my MS neurologist on december 27th & hope to find out what type of MS I have.

so good luck to you & I hope the leaflet suggest above settls you a little :slight_smile:

As far as I know, the main difference between RRMS and SPMS (& PPMS) is that you have no periods of remission - symptoms tend to be permanent.

Now, these could be extremely mild - but continuous, so there is no let-up from them. With RRMS, there are periods where you experience physical difficulties followed by periods where these difficulties subside.

I was always told that with RRMS, you could expect 95% recovery of physical function after a relapse - I don’t know if that’s still accurate as so much has been learned about MS since that figure was suggested ?!! (I was also told that half the people initially diagnosed with RRMS go on to develop SPMS after about 10 years.)

At least with SPMS, you get a chance to come to terms with whatever isn’t working the way it should and you can then find ways to allow for the new situation.

With RRMS, the unpredictable nature of it can often be much harder to deal with.

Dom

I agree with Dom; it’s not ALL bad news.

Although nobody has yet said so in so many words, I’m increasingly convinced I’m either SPMS or well on the way, as I’m not sure I’ve had a “proper” relapse since diagnosis three years ago, although I’m sure I had several before that, but obviously didn’t know what they were back then.

In some ways, it would be nice to think the risk of relapse was now past, and I’d no longer have to go to bed wondering if everything will still work in the morning, that did today.

If somebody said: “Well, you can forget about the relapses now - you’ll get worse than you are today, but not necessarily fast”, I might find that easier to live with than the not knowing. I don’t know how long you need to be relapse-free, to conclude that phase has probably passed. I do sense I’m still getting subtly worse - tireder, weaker etc. - but not that I’m having relapses. Not wishing to tempt fate, of course - I might have one tomorrow. But I’m just wondering how long before a neuro confirms my suspicions and says: “Look, you don’t really have them now - the reason being that it’s become secondary progressive”.

With hinsdsight, I do feel I had MS for years before being diagnosed, so there’s a chance the RRMS phase was already drawing to a close before I even saw a neuro!

I’m not going to panic about it, anyway. The MS doesn’t know what label medics choose to put on it. As far as I’m concerned, it’ll still be “my MS” I’ve had for years, even if and when my neuro decides to award it a different name. I’m not expecting an instant change on the day it becomes official - I’ve been suspecting for ages anyway.

Actually, pretty similar to how I felt about initial diagnosis. The penny dropped that I’d already been ill for years, so in some ways it was academic whether they gave it a scary name or not. My health would still be the same as the day before they told me!

Tina

x

Hi Sue 10,

I had rrms for about 12 years and had my last ‘proper relapse’ about 5 years ago. Some stiffness in my left leg stayed with me after that relapse. Then about 3 years ago my leg started to give me some more trouble and was getting gradually worse and I suspected spms but my nuro didn’t agree and started me on tysabri nearly 2 years ago.

While on tysabri my symptoms continued to worsen and after 10 infusions my nuro decided that I have spms and stopped tysabri. My spms is progressing rapidly and mobility is really, really bad and geting worse by the week!!! He has told me that leg symptoms could ‘stabilise’ but that doesn’t seem to be happening sadly.

My mri shows that my brain is pretty good without many lesions but my spine is the problem - hence lower limb problems.

Hope I haven’t depressed you too much with my story but as somebody mentioned already, everybody’s story is different and mine is not a great one. I would prefer to be rrms and have a chance of recovery even if it is unpredictable 'cos I’m only 46 and life is very tough =(

you can still have relapses when you have moved on to spms, not everyone stops having relapses,i certainly havent,mine have just got more severe,and just leave more damage than when i was rrms,i think its improtant for people to realise this.

My ms has always been Secondary Progressive - so l have never had a remission. lts nearly 32yrs now. We are all so different - and when l first started on this forum - reading about people with RR - l felt l had a different illness altogether.

l take LDN - which keeps my energy/outlook positive. Vitb12 for memory/brain/fatigue and Vit d3 to help with everything else - oh also magnesium - which helps with stiff and cramped legs. And Sativex, which also helps with mobility/stiffness.

l am not sure how much of my mobility problems are now MS - or just the wear and tear of getting older. Certainly, my osteo-arthritis is bad and very painful - but these joints have had to compromise for the ms weak ones. Hip has been replaced and knee next. So hopefully, l shall be able to move about better afterwards.

Make the most of what you can do - and keep moving - moving -moving.

I was told that I have now entered the progressive phase of MS the last time I saw my MS nurse. This was after being diagnosed with RRMS 7 years ago. I haven’t had a relapse in about 2 years now but my symptoms are (very) slowly getting worse. Don’t let it get you down…

RRMS and SPMS & PPMS ok so lets clear this up please?

Secondary Progresive is one of them…but what does it mean? & what do the others mean?

I’ve been suffering with these symptoms since January, one symptom has gone away since but the rest i’ve had all along without a break. I’m also developing more symptoms since being diagnosed in October with MS, so what catagory would I fit into?

Pip x

Hello pip I think Dom as given a pretty good description. There is lots of good information of each one on this website. I’ve just been told my type of ms is primary progressive. My symptoms never change and unfortunately have steadily been getting worse. I hoping things stay as they are now. I know someone who is relapsing-remitting ms and goes from one relapse to the next. Breaks my heart, this person is of a similar age to my own child. Really glad it’s me and not my son or daughter that as the ms. Maybe you should ask your neuro what type you have. All the best xxx

thank you blossom & apologies for my ignorance, I’m a newbie on here & not having had my appointment with any MS specialists yet after being diagnosed with MS in October, I’m realising I’m having to find out as much information as possible by myself.

RRMS = relapsing-remitting

PPMS = primary-progressive

SPMS = secondary-progresive

this is what I needed to know as there are so many abbrevations on here it’s like reading a different language! & as dom said

the main difference between RRMS and SPMS (& PPMS) is that you have no periods of remission - symptoms tend to be permanent

Now I’m almost understanding this, I just have to find out the difference in primary & secondary

thanking you for your help

Pip

Hi Pip,

The difference between primary and secondary progressive is quite straightforward.

You cannot EVER have secondary progressive without having relapsing remitting first. Most people with RRMS eventually move to secondary progressive, but typically only after a long time - 10 years or more.

Primary progressive is the other way round. You either have it from the word go, or never. You can’t ever move to PPMS from RRMS (unless it’s an admission of misdiagnosis). The clue is in the word “primary”, or first. It means you can only have it from the beginning; you can’t develop it later.

If someone tells you they’ve gone from RRMS to PPMS, they’re either confused, or it must mean their initial diagnosis was wrong, and has been withdrawn. And out of interest, you can’t switch between PPMS and SPMS either. Somebody who has one has never had/never will have the other.

Tina

x

Hello Pip. Please don’t apologise to me…there’s no need. I was only diagnosed in august and still reading round the subject myself. What Tina as just said above is really interesting. Its the first time I’ve read a description of secondary progressive and actually understood what it meant…my poor brain is just not the same anymore…the more simple somethings explained the better Lol. All the best to you on your journey. You will find lots of excellent support on this forum xxx PS; sorry I can’t do paragraphs. Using my daughters laptop and it won’t let me

Thank you so much Tina… I understand it much more now tha I did :slight_smile:

& to Blossom… you have 2 months on me - diagnosed October & so the journey starts.

I find I’m coming on here more & more for info… I read alot of threads & ‘dx’ seems to come up alot & i have no idea what that is either… I’ll keep reading & enjoy the support there is here, just can’t fault it :slight_smile:

oopsie… just came across the abbrievations in the ‘sticky’ thread so I now know Dx means diagnosis :slight_smile:

Pip,

“dx” is short for "diagnosis!.

May I humbly suggest that next time you are using these forums, you stop by the thread "Abbreviations - please make sticky " at the top of this board which will hopefully clarify some of terms you will invariably see .

Good luck!

Dom

Thank you all so much for reading my message and posting replies. You’re all great.

I now feel a bit of a fraud as I have been diagnosed with MS for 19 years so it is not new to me but the PMS diagnosis is!I think that I had RRMS but the relapses gradually decreased and I don’t know why but may have been because I was managing myself better. Relapses were then mostly brought on by things beyond my control such as falling or unexpected stressful incidents. I had been initially been working full time and gradually cut my own hours of work which helped. Eventually I decided that I needed to stop working all together and that was when I realised that the stress of my job had been having a bad efffect on the MS. I always manged stress well but MS doesn’t like it!

So 5 of years of not working but living an OK life with activities, hobbies, friends and doing too much sometimes, I saw a new neurologist. This nerologist actually listened to me and heard what I was saying. A year later, after me realising that I had been feeling worse for quite a while, he told me that it was probably SPMS. OF COURSE!! I used to be a nurse so why didn’t I recognise that myself? Because it happens to other people, not me.

So that’s it for now. I am still trying to look through rose coloured glasses and live life as before but I’m noticing things getting harder. In some ways I wish I hadn’t been given the diagnosis as I might not be thinking about it so much. I jsut hope that as time goes on, I will become more accustommed to the label.

I AM STILL ME!

Hello Sue. you keep looking through them rose coloured glasses…your doing just fine. I’m a qualified nurse, we don’t know everything. You just carry on being you. Take care xxx

l found Tina’s description of SPMS and PPMS very interesting as l was told that mine was SPMS from the start - 31yrs ago.

Tina’s explaination makes it clear that as l have never had ‘remissions’ or ‘relapses’ - then mine has got to be PPMS. l suppose 31yrs ago - it was in the dark ages.

My illness started when l was pregnant - it came with a bang. l looked as if l had suffered a stroke. And although my speech did return - everything else stayed the same. Virtually no use in left leg - weak left arm/hand - and doubly incontinent. All the fun of the fair!!

l have progressed somewhat - but most problems are now wear and tear.