So a little bit about me…I’m Sam, I’m 36 and after 2 and half years of symptoms and MRIs I was finally diagnosed with RRMS in Jan this year.
Social media/Forums is not usually my thing but I’ve found myself looking on here so many times this year and thought it was about time to say hello and get involved really, read so many posts that have made me sad/scared but also made me smile and laugh.
Had my first bad relapse July this year which resulted in a few days in hospital and July being a total write off but hay ho!
In terms of meds, tried Tecfidera twice now but side affects were too bad and had to come off it so I’m now reviewing the DMDs my consultant has said is available for me then it’s decision time again.
I think MS is quite overwhelming at times to be honest, I don’t look into things too much as I know it can affect everyone in different ways but jeez, so much to take in!
Anyway that’s me, looking forward to speaking to you xx
I’d say welcome to the forum, but it sounds like you’ve been hanging about for a while, just waiting to dip your toe in!
Welcome anyway to the gang no one would choose to join but sadly we have no option.
It’s a shame about Tecfidera, but then I think there’s a fair number of people who similarly can’t take it. It’s a tough choice picking a new DMD from a selection offered by your neurologist. If you’ve not seen it before, have a look at: MS Decisions aid | MS Trust It’s a matter of weighing up the benefits (relapse reduction potential) versus the costs (possible side effects). So if you compare the drugs your neuro has proposed might be suitable for you, it’s possible to come to a reasoned decision. And if you start one that either doesn’t work well (more relapses), give you bad side effects, or you just dislike, you should be able to switch again.
I must say, MS is overwhelming for most of us, especially at the start of our diagnosis. There is just so much we don’t know and honestly it will probably take years to wrap your head around it. (It did me!) Having a group of people who can at least give you the benefit of their experience will help. At least, we’ll try to help.
Just don’t expect too much of yourself. MS is a stinker and there are so many aspects of it to learn about. It’s nearly 25 years for me and I get to learn new things all the time.
If you MS knocked you so flat that you ended up in hospital, I think that gives you a very clear message about how important it is for you to get on top of it. In your shoes, if my neurologist recommended one of the high efficacy disease modifying treatments to me, I would say yes immediately. For what it’s worth, my MS has always been pretty aggressive too, and I have been on Tysabri for 10+ years and it has held things completely stable as far as I can tell. I was on one of the first line injectables for 10 years before that, and that didn’t really go so well. I wish I’d started the stronger drug sooner. That’s only my experience, of course. Good luck with whatever you decide.
Thank you so much for the warm welcome, really appreciate your supportive words
Sue - Thanks for the websites to look at, I shall get some homework done and see what I’m swaying towards based on what you’ve mentioned. Just had my appointment letter through today, meet with the MS nurse 23rd of this month to discuss and decide so at least I can be a little prepped. Tried doing this over the weekend…let’s just say I didn’t get very far!
I mean this is the nicest way but glad I’m not the only that’s struggled/is struggling getting to grips with it, I seriously kept thinking why can I not retain this information, it’s like my brain forgets what I’ve read and thought I’d taken in!!!
Lovely speaking to you all already, so glad I finally posted
It really is good to know others have had similar experiences and understand. Obviously, no one wishes MS on anyone else’s, but omg we are so grateful for each other!!
Sounds like you’ve had a rough ride before the Tysabri, nice to read that it’s stabilised things for you.
To be honest the other symptoms I’ve had since this started in 2018, I’ve managed with but not going to lie July was quite a scary time and as I’ve learnt MS is unpredictable, so I will definitely be taking your advice on board.
I can see why, as much as family etc. are there to support and care, they haven’t experienced whatever it may be we’re going through at that time, even if we don’t know ourselves, there’s been times I’ve thought is this a relapse etc??. You lots are the experts purely down to your experiences. I certainly know where I’ll be coming if I need advice of any kind…you lot!!
xx
