Hello
So yesterday I had an appointment to see a Consultant at Hospital.
I was told that my last MRI Scan showed minimal progression and that the Lesions were currently none active.
All well and good… Yet, I still have symptoms, no change in the way I feel or my ability to do things.
So I gather from this small amount of info given that the MS has reached a point where progression has hit a wall so to speak… but for how long, I wonder?.
Hi Peter, a lot depends on the type of MS you have, if Relapsing Remitting, then you’re possibly having, though not quite enjoying, a remission, it could be months or years before a relapse happens again.
Inactive is good news, remissions are great news. You already have some lesion, so those symptoms will remain. That’s layman’s terms of course.
I was lost when I was diagnosed, didn’t understand it, thought I was a hypochondriac 'cos of so many different illnesses - but it’s PPMS & I’d never heard .of it. Just thought MS meant was be bed bound for the rest of my life. Yet I felt great.!
Lots of info available, “What is MS” & many other Free publications for managing symptoms, from this MS Society, details on the home page. I’m sure many others on this forum will help with links and info too.
Progression hasn’t hit a wall, your MS is k taking a break and that is good news!
Not much to be added to Chrissies post.
If you have RRMS, then you’re in remission. Yes, you can continue to experience symptoms outwith an actual relapse. Sometimes the symptoms of a relapse don’t entirely disappear, and sometimes it takes months or years for them to either recover, or for other nerves to compensate for the deficits.
If you have either SPMS or PPMS, minimal progression sounds good. So it would seem any progression is happening on a very slow basis. I strongly suspect that for some people, secondary progressive MS is an improvement over RRMS, the real damage is done during relapses. (It’s a different story for PPMS I think.) I don’t think I’ve had any change in my physical condition for the last couple of years. Yes, I’m badly disabled, I live with major problems, but I reckon the damage was all done while I was RR. At least, that’s what I’m hoping.
Sue
Sorry I forgot to say that I have Secondary Progressive MS.
In which case, you sound like me. SPMS, probably been SP for a few years, but my neuro only admitted it last year (at the point when I’d run out of DMDs).
And in the last few years I’ve had no progression. I had an MRI a year ago(ish) and there had been no significant changes for me either. Since that MRI, I decided to change from seeing a regular MS specialist consultant to seeing a Neuro Rehabilitation Consultant. (Who I already saw as well.) and that works for me. He’s as good as a regular non specialist neuro, except that he’s brilliant at MS and drugs and has been great at just answering questions in between appointments, which he arranges for every 9 months. And he has the keys to the rehabilitation unit which helps because I had an operation last year and am due another this year so he’s been so far able to give me a room for post operative care on the unit.
I only wish everyone were as well cared for as me.
Sue
If you’re like me, then you have some damage left by previous relapses that healed mostly when the inflammation receded, but left behind some permanent damage of the sort that is irreversible. And so we are left with permanent lane closures on our neural highways.
But never mind: nothing either of us can do about that. No current activity is the best possible news available, and long may it last.
Alison
Thanks all for the info, I’m a little the wiser and have a better understanding of what’s going on with me.
I tend to agree with Sue when she says, " I strongly suspect that for some people, secondary progressive MS is an improvement over RRMS, the real damage is done during relapses." My sister was/is RR and until her most recent relapse she had some mobility problems but could still get around, her balance wasn’t great but certainly didnt keep her housebound, in fact on many occasions you wouldnt think she had MS. Her latest relapses 2 months ago has totally changed all of that. At the moment she’ still in hospital, can only just move one of her wrists, totally incontinent, cant swallow, no leg movement and being fed through a tube. Just a single relapse did this !!
My Aunt is in a very similar position jactac.
She was diagnosed with MS 16 years ago and over that time she has progressed so much that she is now bed ridden, unable to speak or move, has to be fed via a tube etc.
Apparently there wasn’t the medication or treatments that there is now available back then, what a difference it could/would have made, damn shame.
I’ve come to my own conclusion that RR is very much an unknown ticking time bomb, even if the relapses are few and far between.
Unfortunately it might only take the one particularly nasty relapse to have a life changing, devastating outcome, and it’s those people who are RR and not on DMD’s due to the lack of relapses that are probably at more risk, just as my sister was.
So in a sense a slow progression onto SP is something perhaps you learn to live with, albeit very hard to deal with.
However, and this is only my personal thoughts, and especially after seeing what has recently happened, in a blink of an eye to my sister, I feel “safer” being told that I’m now probably transitioned to SP.
Yes MS is now with me every day, and it’s hard work to deal with physically, but in a funny way I’m starting to learn my limits rather than just push myself until I “crash”, but also it’s a mental relief to be told by your neuro and read the stats that relapsing tends to be less of a risk when SP.
Obviously a relapse is possible, nothings guaranteed with MS, but it is a bit of a comfort when the general risks of having one show to drop when SP.
When I used to look at the graph of MS, RR, SP, PPMS I used to always worry that I would move on from RR, but in reality the worry should of been was, what if I’m not on DMD’s and one day I have “THE” relapse that changed everything !
My sister who is still classed as RR is now in a far far far worse physical and probably mental condition than Iam who has “transitioned” to SP, and it’s down to that one relapse !
I feel the same. Yes, life is a bit challenging, I did have a big relapse that took any useful mobility away from me. Not as bad as your sister Jac, but bad enough. I feel much happier knowing (hoping) that any deterioration from now on is likely to be slower than a Big Bang relapse.
And anyone who has RR, even if their relapses are small and few, should get on a DMD if they possibly can. Obviously, if they’ve not had relapses, so don’t fulfill the criteria, then that’s useless advice. But it’s always worth trying.
I was unable to take a DMD, even after that relapse in 2012, my neuro kept trying different drugs, but I was just one of those people who couldn’t take them.
Sue