So after 3 years of scans and follow ups and luckily just ‘mild’ symptoms I’ve been told my latest scan from Nov showed 3 new lesions. The Nero has confirmed a diagnosis of MS and is referring me to the local MS clinic for assessment and to consider DMTs.
After 3 years I was actually not expecting this and now I don’t know how to feel.
That is all for now.
hello MudRunner
You need to give yourself time to let this diagnosis sink in.
Accept your reactions, anger, fear, hysteria etc etc etc
let them all out. swear like a trooper, go outside and scream/howl at the moon.
Then decide that you are going to survive this and will do whatever is needed.
You can begin by researching the DMTs - the MS Trust have a lot of info on them- www.mstrust.org.uk
Let us know how you get on.
Carole x
Thanks Carole. I am trying to be kind to myself and allow myself time to process everything.
when presented with the possibility of MS over 3 years ago I felt ‘prepared’ for a diagnosis. And as time went on and the scan kept coming back unchanged I came away from this forum and the idea that I might have MS went to the back of my mind. So to be told after all this time I have new lesions and a diagnosis of MS has come as a surprise. I remember thinking after what felt like forever in limbo I might feel a sense of relief being diagnosed. What I feel is definitely not relief. I don’t know what I feel.
ive told my husband, parents and siblings but haven’t brought myself to tell even my closest of friends, people who’ve known what I might be facing and who I know care about me. It feels like the more I tell people and talk about it, the more real it becomes. I don’t think I’m ready for this to be real.
anyway, thanks for your reply and support x
Hello
I second everything Carole’s said so I won’t repeat it. The only thing I would stress is that you need to get accustomed to the diagnosis before you feel comfortable telling others. Figure out how you feel about it before you start dealing with other people’s reactions. The same might go for your family to some extent. You may have told your nearest & dearest about your diagnosis but it might take some of them a while to react openly and honestly.
Reality is so different to your expectations. And because you’d switched off the ‘it might be MS’ fear, it has been as much of a shock as if you’d never considered having MS. Don’t rush into ‘accepting’ or believing in it. Allow the fear and worry some houseroom. And give your husband (and parents maybe) the chance to express some fear and worry too. It’s as much unexpected for them as for you, and it will affect your husband almost as much as you.
As Carole said, the MS Trust has loads of information you can trust including https://mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid It’s well worth exploring the DMDs you might be offered. Look at them in terms of, a) method of treatment (ie oral, self injecting or infusion, b) average relapse reduction rate, and c) possible side effects. So it’s a matter of benefit versus cost (not £, potential physical and/or mental cost).
We are always here to sound off at, to share your fear and our experiences. Lastly, I definitely agree with Carole about the need to swear. Even if you have to go into a room alone, put some loud music on and yell at MS. Because it’s so not fair. After 3 years to hit you with a belter like this. You didn’t expect it, don’t want it in your life and wish it would *¥#^\§ off!!
Sue
I am sorry to hear this, MudRunner - I remember you on here when you first started to wonder what was amiss. Well, it’s taken a while, but at least now you know and can start thinking about treatment options to keep you as well as you can be. It is excellent news that you have had only mild symptoms because that means you can, with luck, get started on an effective DMD before MS does too much damage. Once permanent damage is done, it’s done, so preventing/minimising future attacks is the name of the game here, and that’s what DMDs can do for you.
I am sorry you’re now officially in the MS club. Good luck with it all.
Alison.
Thanks Sue. I think what you say about needing to get use to the diagnosis before telling others hits the nail on the head. I don’t think I’m ready for the questions or emotions of other people. I’m barely keeping myself together at the moment.
Loud music and swearing sounds like a great idea! I’ve taken to bubble baths and wine lately but releasing a bit of anger might do me good.
I remember you from when I first joined the forum and always find your messages so down to earth, honest and supportive. Thanks.
Hi Alison, thanks for the kind welcome. Although not a club I wanted to join, but then none of us did. It’s nice to know that there are other people out there who have been / are going through it and can offer support and advice and some element of positivity and reassurance that life isn’t over just bc of MS.