I saw my neurologist yesterday was really harsh with me said my ms is now progressive so scared what does this really mean for me? I know I am worse can hardly walk but was so positive when I went about the things I can do not the things I can’t. Felt like the rug pulled from under me just scared about what future holds. Do everything right physio, take gilenya everyday, try to be positive.
why is this happening to me!! X
Sorry to hear that your neurologist wasn’t more sensitive. I think they sometimes forget that there’s a human being in front of them rather than an illness! You have to remember that RRMS or SPMS is just a label and you still feel the same today as yesterday, you are still able to do the things that you were feeling positive about yesterday.
I was diagnosed with SPMS ten years ago, having had RRMS for the previous ten without realising it. It took me a long time to get over the word ‘progressive’ because you envision a steep downward slope. Actually I’ve been pretty stable for ten years, my walking’s a bit worse (but helped with a FES) and I have crap days but mostly I just carry on and try to keep doing the things I do, admittedly my dreams of running the London Marathon again have been put on hold…
Keep doing what you’re doing and try to hold on to that positivity!
Becky xxx
Thank you for your words was a tough day. If only my mum understood she still has the application for London marathon on side!! Why can’t she get this convinced I will get better on treatment! Arggg.
i walked my dog yesterday and will today so as you say nothing has changed
Suzanne xx
Was “reclassified” a couple of years ago, I found out by my specialist sending a letter to my GP, symptoms getting worse, blah, blah, but not unexpected as “she” has SPMS. Not the nicest bedside manner, but I suppose now I know!!! The specialists are not the best at passing on info, especially if they feel uncomfortable upgrading you, unfortunately!!! Carry on as you are, keep an open mind & 1st & most important, enjoy your life, deal with probs as they arise but just be you! All the best Tracey x
Hi Suzanne,
Welcome to the Forum.
Becky’s quite right. I’ve been saying for ages that RRMS, SPMS, or PPMS, it’s all MS.
What does the label matter when we get up in the morning, put the radio on and have a cuppa?
If I can’t do tomorrow, what I did yesterday it’s not because of my MS.
Best wishes,
John
Hi
If your neurologist has left you on Gilenya, s/he is either not 100% convinced you are progressive, or suspects you may be progressive but still with relapses. Gilenya is only approved for treatment of RRMS, so there must be some doubt. Or some justification.
But as your other responses have said, there’s really very little difference. My neurologist finally stated that I’m progressive, but he only said that after I had exhausted my options with regard to DMDs. This tells me that it’s very much a sliding scale, neuros tend to leave you on a DMD as long as possible even after they think it’s likely that you have progressed.
Once he said I was ‘in a progressive phase’, there was basically no difference to me. I still have exactly the same deficits as before. In fact, once told it has become definitely progressive, it’s made up my mind to get some bits and pieces that I’ve been living with, ‘fixed’ i.e. related to bowel and bladder.
Sue
Suzanne - these categories are horrendously flawed. As I’ve posted before we can have bits of us in a steady decline but other bits of us may recover over time - so as an entity we’re not SPMS.
Even neuros can’t see into the future - are they really so sure that some of us will never have any improvement - however slight!
And what about this vocabulary that’s foisted on us. It’s bad enough having Multiple Sclerosis but to prefix that with Secondary Progressive is scary.
tbh if someone told me their (any) condition was ‘Secondary Progressive’ I’d be getting out my funeral suit and ordering a wreath.
When I last saw my neurologist, back in April last year, he told me that he saw no sign that my MS was shifting to Secondary Progressive. Since I saw him I’ve developed foot drop, my walking speed has probably halved and the distance I can walk has plummeted. I don’t know what the criteria are for SPMS rather than RRMS but I’m hoping that I don’t meet them. I’m happy taking Gilenya and the only DMTs for SPMS are interferon or Mitoxantrone. I can’t take interferon because it caused depression when I took it some years ago. Mitoxantrone is most effective for people who have relapses and I don’t like the sound of the side effects any way. Gilenya seems to be keeping relapses at bay, apart from one about a year ago, so I don’t know how badly I would suffer if I was taken off it.
Yes, RRMS and SPMS are just labels, however gently or bluntly they’re applied. A label won’t make any difference to how we feel or what we can do day-to-day. Where it does make a difference is in the availability of treatments for our condition. So I’m content to say that I have RRMS till my neurologist says otherwise - gently, I hope!
Yes, I’m like Cheerful Dragon. Same shite, different labels. MS is MS.
Dxd as RRMS eighteen months ago, May 2015. Started DMD July. Big relapse/incident four months later, September. Came out of hospital needing a crutch. By December I was using a rollator. Agreed to change my choice of drug to Tecfidera March 2016. By April 2016 I was using a wheelchair for any real distance. When I saw Neuro again, she confirmed what I’d already suspected. My MS was PPMS and not RR. I asked and she agreed, to stay on Tecfidera. I think we both know it’s purely psychological, a sort of insurance policy. Just in case…!
I see her again next Monday. I have no idea whether to stay on the drug or not. I can now only shuffle indoors and have to use the chair at all times outdoors. I can’t feel my right foot most days and so have chosen not to drive anymore. We will discuss it Monday I guess.
I feel for you, Poppy. Some years ago I had a bad relapse and for about nine months I had to use a wheelchair when going out. I wasn’t strong enough to self-propel, so I relied on Hubby to push me around. I hated the loss of independence, which is why I prefer to use a Rollator when a walking stick isn’t enough. It’s my left foot that’s affected by foot drop. I don’t drive much but thankfully my car is an automatic, otherwise I wouldn’t be able to drive at all.
Like I said, I’m happy (!) with Gilenya so I’ll try to stay with that, even if my neurologist tells me that I have SPMS.
Different Neurology departments, different criteria.
Different Neurologists, different labels.
Just do what you can, while you can still do it.
The worst thing for me was having to get a neighbour to change a light-bulb (yes, truly).
Geoff
Sorry to disillusion you, but they aren’t just labels - when you’re progressive, you will no longer get a DMT. SPMS or PPMS, you won’t get anything - as there is nothing and won’t be until Ocreluzimab/Siponimod etc are approved.
So the label makes a very big difference.
I have a blow torch for all my illumination requirements. Christmas is a blast!
I had RRMS for 12 years or so and now have had SPMS for for 8 years or so. Certainly for the first few years of having SPMS In a way, it was easier to deal with the RRMS as there was much more consistency in my symptoms and I pretty much knew what tomorrow, next week and next month was going to be like as my progression was fairly mild. With the SPMS, I was worse that when I was in Remission but I was much better than when I had relapses.
So being labelled SPMS isn’t the end of the world.
Derek
Thank you for all the comments with the exception of maybe Josh we are all being positive josh not feeling so good. I know no treatment but needed to feel not so scared in the immediate future so thank you everyone for you positive and reassuring comments.
suzanne x