I’m 34 and I was diagnosed with MS in February 2024 after a second attack, although having had no knowledge that a previous issue was an ‘attack’ or anything related to MS in 2019. It was a bit of a shock but I was diagnosed as very mild and no need for treatment due to the length of time between attacks. I left thinking ‘I’ll be fine!’.
I have since become more concerned though and am a little nervous about it all to be honest! I have plans for the future and it’s now starting to play on my mind that I don’t know what the future looks like time-wise. I have some potential new symptoms that I’m seeing an MS nurse about on 28th May, could be nothing but you never know…
I’m keen to see if there’s anyone else around the Southampton area to meet up and chat or get any advice from. I have good people around me but none with any knowledge of MS unfortunately. I’m still active and healthy, so understandably a lot of people also think of it as a potential ‘future issue’, as I did initially. Any help/advice welcome.
I was (finally) diagnosed with RRMS in 2013. Like you I had a big gap between my first two episodes and was told it was nothing to worry about. With the one in 2013 I was put on a DMT almost immediately, and told now was the time to let the DVLA and any insurance know I had definitely got MS. And of course work! 11 years in and my current DMT is doing its job. I haven’t had an episode in 4 years and everything for now looks stable. Keep in touch with your MS team and also keep a diary of any symptoms.
I am understanding of how stressful an MS diagnosis can be, even in light of the possible uncertainties. Your condition’s mildness at this point is a plus, but as you learn to manage new symptoms, anxiety is normal.
Good evening all
I am newly diagnosed as well. Started treatment 5 weeks ago so just finished my 4th injection of Kesimpta two days ago.
I am from the Southampton area, like yourself I have loads of questions and concerns. Happy to help answer any questions
Hi @toripaterson
I was initially dx in April 2001. My RRMS was relatively quiescent, albeit with occasional relapses, from about the age of 19 to around my late thirties; I’d say that’s roughly 20 years of fair health.
Since then however, my mobility has taken a tanking and I rely on the use of 2 walking aids due to severe fatigue these days, I think that’s 6.5 on the EDSS disability scale.
So if your symptoms don’t severely affect you and are relatively mild, then try not to be too concerned and definitely carry on with your future plans, while you’re active and healthy.
Best regards,
JP
I do believe some of the top MS neurologists recommend hitting it hard with DMT. In fact they even recommended starting treatment if you have been diagnosed with CIS. I was diagnosed with CIS almost 5 years ago and unfortunately for me the neurologist (not a MS specialist) did nothing and recommended nothing. Thus leading to a diagnosis of RRMS. My now MS specialist has said they would have advised DMT on the diagnosis of CIS and perhaps I wouldn’t be on the position I am in today. The key is to think about the future and where you want to be health wise and not today.
