Just a quick ‘hello’… I spent some time here when I was first diagnosed with MS, a couple of years ago, and then drifted away from it - changed emails, couldn’t get back on to the site. But I am still here and fighting, and it would appear that I can rejoin the site properly now, thanks to the lovely admins who set me up again. (thanks guys!) No particular topic, just to say I’m back and glad to see you all. (Just to remind people - originally diagnosed with ‘stroke’, but later they did a U-turn and decided it wasn’t one, and dx went to RRMS instead.) On Beta Interferon injected 3 times a week, presently still in remission but having memory/fatigue issues. Consultant is not very communicative and merely wants to change my drugs to something different. I saw another consultant recently at a different hospital, who was far more communicative, and actually took an interest in me as a person, not as a case - and she explained why they are not going to put me on Lemtrada - I’m not ill enough yet! I’d have had to have been hospitalised with relapses several times over the last twelve months, to be considered ill enough for it. And I’m lucky that I haven’t been.
Hi, nice to have people come back again to this forum.
Hello, welcome back! Wow, you needing to have been hospitalised before they’d consider Lemtrada seems a bit intense? I’ll be given that soon and I’ve never been hospitalised!
I suppose a lot of it’s down to your area’s budget for treatments? As well as the things like the intensity of each individual’s disease. Good for you getting a consultant who shares more though. Mine’s not one for explaining anything, and as my mental MS symptoms combine to make it close to impossible for me to think to/remember to/be able to extract info from him I rarely see him, and get little of any use when I do.
A little example; he prescribed me steroids for a relapse but said to try not to take them until after I’d had the MRI, but he didn’t explain why. Luckily I sat for a while after seeing him, and 20 minutes or so later saw the MS nurse, so brain had had a chance to process what he’d said, so I asked her why. She says it’s because new plaques are larger, but they shrink after a few months, taking the steroids shrinks them straight away, so an MRI after a steroid treatment’s not going to be able to define new plaques as they’ll all be the same size.
Why didn’t he tell me this D: I’m sure he would have if I’d had the brain power to ask the right question, but I didn’t, I never do We could do with a pause button, couldn’t we! Just stop everything until our brain’s had a chance to catch up.
I did ask what I’d need to do to change consultants to the more communicative one, but there was all sorts of problems with that… the regular consultant’s based in my local hospital (and even that’s not very local, 'cos I live out in the sticks) - and they would have to tell him why I wanted to change to the one in a completely different town. All things considered, it didn’t seem worth the hassle of antagonising him… he has no “people skills” at the best of times, but he’s there and I will almost certainly need to see him again…! But I’m not impressed with his admin skills, and have learnt to put everything down in writing for future reference!
Yep, I’m putting it all down to budgets…pah. I understand the NHS isn’t exactly rolling in cash - but (excuse the politics) the tories will be trying to kill it off for ever, before they get thrown out of office again - I just hope it survives their term. I’m not badly off with the MS, considering - reading what some people are going through on here makes me appreciate that. Still working, although I’ve had to reduce my hours and drop a grade because my brain isn’t what it used to be and I can’t cope with the full intensity of the job any more… but I’m still here! And every day I make it through- an N.E.F. day (“no egregious f***-ups”) - is good.
Thanks! I’m glad to be back here… good for letting off a bit of steam with people who understand a bit more about what it’s like, living with this thing.