Hi everyone, feeling a bit emotional at the mo. I saw my GP earlier this evening - a follow up appointment from a couple of weeks ago when I was started on amitriptyline. Doc asked if I’d had the results of my MRI and when I said ‘not yet’ she looked on the computer and found the report which has been sent to the consultant. It said that the MRI shows 7 new lesions in the brain, suggestive of disease progression and mentioned the cerebral hemisphere. GP said the diagnosis can only come from the consultant, but it’s looking like he will say MS. She’s gonna write to him to tell him about the conversation we had today and thinks that things should move quite quickly now, which is good. But I just thought I’d post on here and see what you all think please??? The last MRI was 18 months ago - is 7 new lesions over 18 months a lot? Any thoughts about what this means would be appreciated. My first reaction was relief - sometimes I think “am I making a fuss about nothing”, so it was nice to know that I’m not! But now I feel a bit tearful and apprehensive about what it all means. My Mum’s sister had MS - she got gradually worse and died when I was 15. My only memory of her is in a wheelchair. That’s a long time ago - I’m 51 now and I know that things have progressed over that time and there’s meds and help available…
Anyway sorry to ‘waffle on’ but any thoughts would be appreciated. Thank you for the feelback I know I’m going to get.
Seven new lesions does sound quite a lot, but it’s really not that straightforward for lots of reasons. First of all, MS often has periods when it’s really active followed by long periods when it’s really quiet - your quiet period may be right around the corner and it might last for many years! Second, MRI scans are not perfect: some of these lesions may not be new after all - they could just have been missed last time. Third, lesions come and go. If you had another scan today, some of these lesions may not be there any more. Fourth, we are all so different: some people with loads of lesions have quite mild MS and yet others with hardly any lesions have really severe MS.
The most important thing about lesions is where they are, not how big or how many they are. As a result, the best measure of someone’s MS is their symptoms and not their MRI scans.
There could also be another explanation for your lesions too of course - it may not be MS! Wait and see what the consultant says.
If it is MS, then what happened to your aunt is NOT a good guide of what will happen to you. Even mothers and daughters with MS can have completely different experiences of it. Plus, there are some really brilliant meds available these days which weren’t around in your aunt’s day.
Thank you both for your care, support and very helpful, sensible and down-to-earth comments - you’re both right of course I guess not a lot has changed at the mo - I’ve got through another day at work, I’m thinking about stuff I’d LIKE to get done at the weekend and I’m sat here typing this! There’s no point in focusing on what you can’t change huh? I need to be patient until I see the consultant and find out what he has to say about it all. Generally I’m a fairly ‘sensible’ kind of girl, but sometimes I guess we all get overcome by how things are huh? If I do end up in a wheelchair though I want a turbo charged one with ‘go faster’ stripes down the side! lol
Initially there was no way I was going to “give in” to ms and use a chair but eventually, like Poll, I got fed up of falling over and also of the sheer exhaustion caused be concentrating on every step and bought a very sporty little red set of wheels!!! And gained some independence back. In fact I call my wheels George after George Michael …“Freedom” being one of my favourite songs!! Now I only use them when I need to cover a large distance but my relapse seems to getting better and I am better on my feet so have graduated, with my ot’s help, to a walker.
Thank you so much for further posts from Pip, Poll and MrsH - you’re all so lovely. I’m trying to keep my sensible head on and take things a day at a time… Glad that ‘George’ has been giving you a bit of independence Mrs H and great to hear that the OT has been able to help. Poll - have you got a name for your ‘wheels’ I wonder??
Totally…I only use George to conserve what little energy I have. I have discovered that my life is now an exercise in not exercising!!! Prioritising what I want to do and therefore saving energy for the nice things.
