Last reply 6 months ago
Newly Diagnosed

I was diagnosed with MS early this month (December 2018). Still going through all the steps to get started on Gylenia medication. I’m still not sure what to think or how to feel about all of this. And to make me feel even worse, it’s very possible that I had a flare up about 3 years ago that was totally misdiagnosed. What do I do now? How will my life change? What about my children?

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6 months ago

Hi @me1123 and welcome to our exclusive club. I know you’d have preferred not to join, but this is just one of those curve-balls that life can throw at you.

For the moment, don’t get weighed down on what to think or how to feel. You’re probably still in shock from the diagnosis, so you just need to sit down and allow yourself to process this information. Although, you may want to concentrate on Christmas first!

A diagnosis does tend to explain your previous unexplained/misdiagnosed medical dramas. But that’s all history.

So, how will your life change? Well, that’s the future and nobody knows what tomorrow will bring for them. But, you have been given the opportunity to reappraise your life. Your ongoing health will now be a priority. Lining healthily, eating healthily and avoiding/managing stressful events will all play a part for you.

Your children will still see you as their parent and your bond will be even stronger. If your MS is noticeable, your children will develop into kind and considerate adults, aware that life can play cruel tricks on us.

But, generally, MS is no longer the condition that it used to be. There have been a raft of medical developments over recent years, that have produced the number of treatments that are now available. More is now known about MS and discoveries are opening new avenues of research with the possibility of further treatments.

There’s never a good time to get MS. But, if it’s going to happen, then now isn’t a bad time.

So, take your time, enjoy Christmas and then see how the dust settles………

6 months ago

Hi @me1123 and welcome to the very exclusive club🎉We’re all quite safe here, whole range of ages (I’m 62) types of ms, experiences,etc., you have only recently been diagnosed, sit back, have a cuppa, don’t rush anything and try not to stress, stress is the worst thing in the world for ms, I hate to say this, and wouldn’t wish a dxd of ms on anyone but you have picked a good time to be dxd. There are so many DMT’s available now, in fact you’re already on the list and due to start soon. There wasn’t any choice 25 years when it was my turn, so with any luck and a fair wind you should have a fairly ‘normal’ life. Don’t worry about the kids, they are very resilient and when it is explained to them, in small doses, that Daddy/Mummy can’t quite do all the things that they used to, and they might have to be a little more thoughtful, I.e. Not disturbing you when you’re having a nap, but if they let you rest you will be able to take them swimming,to the park, whatever floats your boat. They will understand and won’t hold it against you!

We’re always here for a natter, a moan, a cry, a rant, a celebration whatever, we’ve all been there so we know what it’s like, and just remember, with ms, there’s no such thing as a silly question👍😅😍

6 months ago

Hello @me1123, well I guarantee you would never have imaginged spending Christmas Day 2018 posting on an MS forum! Sorry you’ve been through the diagnosis process. I think first off, I would say not to rush into making any decisions about anything. You can only feel what you feel, there are no rules around it. You need to focus on recovering properly, from any physical side effects, but more importantly from the shock of diagnosis. The advice above is perfect. I would just add, really treat yourself well,and figure out what support you have around you. Things will be OK, every leroson on this site has been through what you are going through and will understand how you feel. Eat healthy, sleep well, enjoy your children, and keep signed in for company. Oh, and avoid Dr Google! X

6 months ago

Thank you all. It’s just hard not to think about it…everyday. I know Dr Google is bad for you but I still look up things which leads to more questions, concerns, worries. It’s a downward spiral. I know I need to be positive…look at things on the bright side. That’s usually the person I am and I can still be that person for someone else. I’m just having a hard time doing that for me. I don’t know… one day at a time I guess.

My MS win for today: the banding caused by the transverse myletis was not so noticeable today.

Hope everyone had a merry Christmas.

6 months ago


Hi sorry to hear you are going through the shock of your diagnosis. As others have said give yourself time to come to terms with it. When I was diagnosed almost 24 years ago I was in denial and I had the attitude if I forget about it it might go away. It did for the best part of 20 years until I got a relapse. I put a lot of this this down to stress so definitely try to avoid that. I was put on Betaferon the year after I was as diagnosed and this helped to control it. I have been on Gileny since September 2016 and my Ms has been stable since. It is a good DMT and very easy to take compared to having to inject myself. If you need anymore info on Gilenya let me know. Take care. X

6 months ago

Hi, I have the same diagnosis, my sister, at the same time we got symptoms, both are ok, I do not. I am Copaxone myself and I’m not good. What you have MS does not mean anything. I can smile on my face and positive thoughts, maybe it will never be not developed. Great greeting and just 😀

6 months ago

How rotten to get a diagnosis aound Christmas. I can only reiterate what others have said. Your children will accept your MS limitations better than you imagine so make 2019 the best you can for everyone around you. xx

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