Hi all, I’m new here as you can see. I was diagnosed with relapsing remitting MS just before my 21st birthday. I am now 22. I had optic neuritis in my left eye which was really scary and my eye specialist offered to refer me for a MRI scan as he said sometimes that can be the first sign of MS. I agreed and shortly after having the scan I was given my diagnosis from one of the neurology specialists. I was really shocked and upset but I am also really thankful that my symptoms are so mild/non-existent most of the time. When I was 16 I did experience numbness in my whole body paired with tingling, at the time no one knew what was causing this - I was told it could have been a viral infection but now I am wondering if that was my first ‘symptom’ or ‘attack’ of MS. I am just looking for some people to chat to who also have MS as I do not know anyone personally and I think it would help me to be more positive. Because I am still so young I am finding it hard to accept, if I do not think about it I am okay but I can’t stop myself from worrying that I progress, end up on medication etc. and I do not want to be a burden to anyone if this ever happens. Can anyone else relate to feeling this way? There are so many things I want to do in life, especially travel and I am concerned that one day I just have a bad attack and cannot do these things anymore. Thanks in advance
Hi MissL. You need to be patient with yourself and give yourself the time to get your head around your MS diagnosis.
Sounds like you need support both from the specialists and from other msers that understand how you feel. I note that more recently there have been a number of younger posters, they could prove invaluable in sharing a more age related perspective on things.
That said there is a wealth of knowledge and experience across a broad range of ages, which you will be able to, across the topics, draw on.
Try to take each day at a time, be guided by the experts. Even with MS you can still do things such as travel, work, shop and entertain, particularly in the years that symptoms are fewer.
No one knows what is around the corner, so try not to be too fatalistic. Work with your MS team to work out a treatment plan that allows you to access life to the full.
I look forward to reading your next posts. Take care, keep asking
It might be worth trying Shift.ms - Learn about multiple sclerosis and connect with other MSers too, as they tend to be a younger bunch over there.
Hi, that is great thank you! I didn’t even know that website existed. I will look into this
Hello, nice to meet you and thank you for responding. Yes, I can see all of the points you are making. I am quite lucky currently as I have RRMS since my 1st attack I have not had any further relapses so generally I am in good health and have no issues doing the things I want to do. I think it is more the stress and thoughts of getting worse or having a relapse that worries me but I am trying to stay positive. Hope you are well and thanks for reaching out
Hey I had my first symptom in June last year which was also optic neuritis in my left eye. It was very scary and took many months before I felt somewhat back to normal even now in some lighting and screens it can not feel as good as it was. I would say to make sure you do regularly get an MRI done every 6-12 months as if it shows you are not constantly getting new lesions you may not need to start medication yet and can focus on a wellness approach such as physical and mental excercises and looking after yourself. I dont think its something you can ever come to terms with but if you ever need to chat about it just let me know. Hopefully something I said has helped.
Hey, welcome to the forum. Your situation sounds pretty similar to mine. 21 about to turn 22, optic neuritis is my forever symptom I think. A lot of what you say I think is natural for anyone with ms at a young age to think, for me I try to just crack on really, when it gets too much, it’s always helpful to have people to talk to or failing that, people on here. Either way, I think it’s just life and people like us, at our age just need to keep on living and enjoying life.
Hi, thanks for responding! Yes, totally agree with what you said about the eye thing. I find everything looks lighter out of that eye. Sometimes get some pain in it but luckily not 24/7. Keeping an eye on my lesions definitely seems like a good idea, I might mention this to my nurse.
Hi, thank you and thanks for the response! In some ways because my symptoms are currently so mild it seems strange to think I have MS but I am thankful for my current situation not being too severe. I do go about my day and do things I enjoy - I think sometimes I just get in my own head too much! But it helps knowing other people can relate to how I feel
I’m also new to this group
Also sounds kind of similar to my situation. I’m young but not at young as you, I’m 33. Only ever had 1 episode, where the right side of my face went slightly numb about 3 years ago and not had anything else since.
I too worry about getting worse and wonder what the future will be like. They have offered me treatment and because I’m OK at the moment, the side effects of treatment sound worse then having no symptoms at the moment but I don’t want them to get worse if treatment can help with it (if that makes sence) hehe.
I was on YouTube yesterday watching/listening to someone else’s journey, who was diagnosed with RRMS at 28. She says her story, offers advice and is a ms nfluencer
She goes on to mention ‘ms together’ set up for young people diagnosed between 18-35. I did a quick search it is through Facebook, so as I’m not a Facebook user I mention it, rather than making a recommendation.
Hi, thanks for the reply! It’s nice to speak to someone who is in a similar position to me - everyone else seems to be on treatment straight away (who I’ve spoken to). I might pop you a message just to chat. Thanks
Im in my mid 20s aswell, diagnosed for a year but knew what i had for about 2 years (everything was delayed because of the global pandemic).
It doesnt affect my day to day life “visibly” but i can always feel it in my lack of balance and vision. People generally notice somethings up when i try to play football and i fall over a lot or i cant get the ball out from under my foot (slightly embarrassed when i play with people who don’t know that i have a condition).
What i choose to do is not to think about it too much, i take the “ignorance is bliss” model and dont even look at what could happen in future. I go for my monthly infusions and i dont think about it beyond that albeit thats hard because i live everyday with reminders caused by the after affects (what i like to call battle scars) from previous flareups in my eyes and limbs.
Im still relatively new to this so I’m still learning to live with it and accept it, hard part being you dont know what your body will feel like the next day and its hard to explain what you are feeling (wish i could swap minds with people temporarily so they could understand what im feeling exactly). But its been generally good ever since i started my infusions about half a year ago, no new symptoms.
Hello lovely! I am waiting for diagnosis at the moment (if it isn’t MS they don’t know what’s wrong with me and all my symptoms are MS symptoms). I am 21 so very similar age to you and feeling exactly how you are. I don’t know anyone with MS either and all my friends aren’t taking it seriously because they can’t actually see anything wrong with me. It’s very isolating. I completely understand how you feel about finding it hard to accept and stay positive because we are so young it feels like our whole lives are a massive question mark now. I don’t know if it is possible to privately message someone on here as I have only just joined the forum but if you can feel free to message me! Maybe then we can exchange socials or something and try to support eachother through this! Wishing you all the best!
Hello, thanks for responding! Yes, I think we will definitely be able to relate to each other. You can send a message on here so I will pop you one over now. Just check your notifications! Then we can have a proper chat