I don’t post that much but after yesterday I kinda hoping I might get a decent response from fellow MS sufferers. I was diagnosed around a year ago, at that time I was till relatively mobile and could run around a play football with my boys albeit not for a massive period maybe 30 mins or so.
They diagnosed me with RRMS, which is fair enough. However, a year on I am struggling terribly with mobility, I have to use crutches to move anywhere on my on own(in work or at home) but if I go out I am in a wheelchair. I struggle with continence stuff and pretty much anything waist down does not work as it should.
The kicker for me is that I have had no illness since this even began no other symptoms anywhere else in my body other than a month of Optic Neuritis when they found out a had MS. So I am really struggling to believe I have RRMS. I have been on a downward spiral since this started and in my mind this time next year I wont be walking at all?
Following meetings with my MS nurse she agrees i seem to be worse than I should be so she arranges the neuro to have a look. I go to see him yesterday and I get the usual 5 minutes of his time, i lift my legs for him and he say they strong. bearing in mind I have done no walking up to that point so I havent gone the usual jelly yet. My MRI shows no other changes in my brain so he just puts it down to me needing physio.
I do not understand how I can still be classed as RRMS yet I have had no relapses but yet I am just getting worse. My GP suggest it sounds more like I may have progressive and i think my nurse thinks that otherwise she would not of sent me back to him. The neuro infuriates me because you can tell he wants you out before you have even sat down so I am really confused and dont know how to go about it.
Sorry for the winge but was hoping some of you may have had similar stories and what you did to ease your thinking?
I think you need to have an MRI to see whether you’ve got inflammation at the moment. What you’re going through could be a relapse. You sound like you could be helped by one of the really powerful MS treatments - Lemtrada or HSCT.
You may be able to get a second opinion from a different neurologist, if you are not satisfied with the one you are seeing. You might want to post on here saying where you live and getting people to tell you about their experiences of neurologists within travelling distance for you.
Hope this helps - please let me know if it doesn’t and maybe I or someone else will be able to tell you what you need to know.
I had an MRI just a on the 12 which was what he was looking at. He suggested no change was showing. My nurse had suggested a change of treatment but he said there was no need. As I said I really dont think he cares that much but I know in myself its not an issue with physio
If you had a bout of optic neuritis that went away, then that was a relapse. If I were you, I would want to be classified as having RRMS because then you may be offered treatment and that may help you.
As I said above, my advice would be to get a referral to a neurologist who listens to you and tries to help you. There are plenty of terrible neurologists out there, but also some excellent ones. There are treatments that help people - some that act like a cure. You can do something about this, probably. But it’s not going to just happen - you will need to make it happen. But that’s life.
I have lots of sympathy with you, having a cr*p neurologist - I’ve seen a few of them in my time.
You need to find a neurologist who listens. I had to change a couple of times before I found one but well worth the effort. I am also lucky to have an MS nurse who knows that I only ask for help when I really do need it, therefore she acts as an advocate.
Excellent - Usually a private consultation gives more time for an appointment but the vital element for me was finding someone who actually listened and someone you can have confidence in. (I did see my first NHS neuro privately once and the only benefit was a handshake a cup of coffee and carpeted consultation room) A huge waste of time and money as his ability to listen was just as poor as in his NHS clinic. I found another neuro privately via a personal recommendation and he referred me to his NHS clinic. Well worth the effort.
You don’t say whether your current neurologist is an MS specialist, if not, then you should try to see someone who is.
As sewingchick said, if you had ON that remitted, then RR would have been the right diagnosis at the time and may still be. Relapses don’t always remit quickly or fully. So it is actually possible that you are still in the midst of a relapse that’s taking a very very long time to remit. For me it’s always been months and months before I see much remission. IV steroids will speed some relapses up a bit faster, and indeed, I think I’ve heard that optic neuritis particularly responds well to steroid intervention. That might explain why your ON went fairly quickly whilst other symptoms either haven’t remitted yet or aren’t going to.
I wouldn’t be too hasty about wanting to change your diagnosis to SPMS. You also haven’t said whether you are on any DMD, but if you are on a first line DMD (ie. beta interferon, copaxone, Tecfidera, Gilenya) you could ask to be moved onto a more agressive second line therapy, such as Tysabri or Lemtrada. (And of course if you’re on an old style injectable DMD, then get moved onto a more effective oral therapy, eg Tecfidera.) If you’re not on a DMD, then you should think about getting on one asap. Some of the DMDs are also quite helpful for relapsing SP, but you cannot get them once you’ve been given the label SP. I suspect that some neuros actually avoid diagnosing someone as SP for as long as possible for this reason.
I can’t tell you the number of times I’ve thought actually my RRMS might have changed to SPMS. It’s been again and again and again. You can be really quite disabled with MS and have not had a relapse for over a year and still be considered RR. The evidence only comes when you least want it: with a relapse.