Frustration & help
I was diagnosed something like 12 yrs ago. Pre kids, pre living in Scotland, a totally different life.
I’ve been really lucky that over those years my ms has appeared stable on scans and was allowing me to - to a lesser or greater extent - live a pretty normal life for a 40yr old parent.
During this time I’ve experienced, and my family has witnessed, worsening mobility and cognitive symptoms but nothing so major that it couldn’t be brushed offed as general aging / ms wear n tear. The consultant & team were happy with this too, especially as no new damage had appeared on scans since diagnosis.
This changed however after a couple of falls in the summer triggered a fresh set of mris. All of this brings me to a phone call last Friday night. The consultant calls to tell me these scans have shown significant ms damage across my spine in an area particularly associated with mobility. He goes on that, for some reason or other, I’ve never had scans on this part of my spine (despite mobility concerns for years) so we’ve got nothing to compare. Is this new damage or damage hanging over from ten years ago!?
This has - unsurprisingly- sent me a bit loopy. On the one hand I’m kinda happy, I’ve been sure of progression for ages and this just kinda backs it up. I don’t physically feel any different today than I did last week before I heard the news. On the other hand, for f*cks sake, how wasn’t I getting the right scans for ten years!
I’ve gotta now change meds and I think do some fairly significant life rearrangement - I currently work away from home half the week and don’t know if that’s viable / safe / sensible.
Any advice/ sympathy/ care / love / support is very welcome! Also - what’s best; Cladribine, Natalizumab,Ublituximab, or Ofatumuab?
Peace n love x

Sorry to hear your going through this. It’s very much a personal preference to which medication suits your lifestyle. I’ve been on Natalizumab (Tysabri) since 2014 relapse free but I’m sure you’ll find the same story from other people on different medication. Tysabri suits me because I get it every six weeks and see my ms team at the same time. As far as safety in terms of working away from home that is only a decision you can make because you will know in yourself your limitations. Changing meds could potentially mean that your life doesn’t have to change that much. Before making any big decisions see how the meds suit you. Good luck and if you want to know anything about Tysabri get in touch.
Hey, this sounds so so frustrating and would send anyone loopy!! Hope that going forwards you get the full scans you need and have the right support in place 🫂