I was just told that I had MS on Friday, and given that I was convinced that I was going to be told I had MND I felt that I had dodged a bullet, and still to an extent do. My neurologist told me herself that she was surprised given my age and gender (54 and male) that it was MS rather than MND, so I suppose in many ways I am indeed lucky - can I say that? I know that I will have to face the reality of my condition soon, but as things stand I am still a long way from being in that position. Did anyone else have this experience pre-diagnosis?
They have still to ascertain which type of MS I have, but believe that statistically it is most likely to be progressive which I also believe can take a very long time to diagnose. I have no doubt that this will be the first of many posts so I would just like to say hello to you all, and hope that you are having as good a day as this condition allows.
No, when MS and MND are the items on the menu, the choices arenât terribly appetising, are they? I would definitely share your relief if it was âonlyâ MS. As you say, things could be a whole lot worse.
Nevertheless, an MS dx is never terrifically good news, and thatâs going to be a real shock to your system, regardless. I am sorry that you have been having such a worrying time and I hope that things come a bit clearer over the coming weeks and months.
Hi Danny
Like you I was diagnosed in my 50âs (at 58, but turned 60 in Aug) and they took a while to decide on PPMS in my case. In fact, I can trace my condition back to about 2012 although it really took hold with more aggressive decline since 2016. Because I was misdiagnosed for so long, itâs hard to be sure if I had a period of RR- followed by SP- or whether I went straight to PP. Iâve had a history of lower back & hip pain which masked my more obvious MS stuff, such that I never got a head MRI until late 2020.
Does that mirror your own experience or was your diagnosis & history more straightforward? I feel that the vagueness in my history was used as an excuse for them to sit on the fence for longer, so donât let them do that. Keywords: âTreatment Planâ.
Chances are theyâll order you another MRI âwith contrastâ. They inject you with a gadolinium compound which provides better differentiation on the imaging. Itâs no different to the last MRI apart from getting an injection.
In my case, my MRIâs (6-monthly) donât show up any new lesions, so NEIDA (no evidence of inflammatory disease activity) also known as Smouldering MS. Since thereâs no inflammation, the DMT (ocrelizumab/Ocrevus is the only licenced product for PP) would be ineffective on me, so my progression continues unchecked. Hopefully, theyâll pick up activity and theyâll get you onto ocrelizumab ASAP.
Graeme
Hi Graeme and thanks for the reply. Still getting used to the idea of it all, but the overwhelming feeling is still relief at not having MND. I went for a Lumbar Puncture, which wasnât nearly as bad as I expected, and am waiting for the results of that; following those, I will be getting an appointment with the MS specialist and we take it from there. My only symptoms just now are weakness in my right leg and footdrop which kick in after about a kilometre walking, pins and needles at night in my hands, and pins and needles during the day in my left thumb, which isnât so bad. I did have a flare up a couple of weeks ago when my right leg totally went and I couldnât get up or walk at all. It all seemed linked to a bad cold and it lasted for a day and a half before sorting itself out over a week or so. Other than that, I feel fine: a little anxious at times, but fine. The whole unpredictability thing gets me for the obvious reason that nobody can tell me how it will pan out. Fingers crossed and hope for the best I suppose. All the best for the new year.