Hello, I’m 17 years old and have recently in the last month been diagnosed with relapsing remitting MS after a flare up of my optic nerve becoming inflamed causing me to become blind in my right eye. I was admitted to hospital for 10 days to complete steroid IV medication and have an MRI and lumbar puncture to properly diagnose me with MS. In the past i have had 2 other flare ups, my first one occurring when i was just 14 years old when my left side of my body went numb and i had pins and needles fir about 2 weeks. I had another flare up when i was 15 when my right hand and wrist went numb and tingly for about a month. I was never suspected to have MS until i went to hospital for my blindness where my MRI showed leasions on my brain and spine.
I guess I’m just here for some support because being so young I don’t know anyone else who has MS and it is quite a scary experience being told everything at once. I’ve done my research and i have a lot of people around me aho are trying to understand this condition as well as i am but i am just asking for some support of what to do next and how to manage my mental health. I am constantly wondering what my life is going to be like in the upcoming years with this diagnosis and i am scared everyday.
I hope to find someone a similar age as me or who diagnosed young so i can hear about their experience. Ive been told that its good to talk about things but i dont know who to talk to.
I’m also fairly recently diagnosed with RRMS. I was the same age as you - 30 years ago
You may well be the youngest member here but, that’s ok - this place is full of nice people with experience so, come on and chat anytime that you want to. Your next step may be starting on one of the disease modifying therapies to hold your MS back. I don’t think that anyone can tell you how yours is likely to go - it seems to be different for everyone. All you can really do for now is try to get used to the fact and, keep an eye on it until you can understand how yours is going to be.
For now, try not to let it hold you back - keep doing the things that you enjoy
Hiya I’m truly sorry to hear about all of this as I myself understand the pain, I’m 17 too and was diagnosed at 14 with ms, I know right now it could feel like everything you know has just crumbled and it’s hard to find others your age with ms ontop of college or school. I was lost for a long time during my diagnosis being a young person with it and I really feel for you it can be a lonely experience but things do get better as hard as it may be right now I myslef have learnt a lot these past years and if your ever wanting to talk to someone of similar age with a understanding of MS please don’t be scared to contact me! It’s a horrible time right now and you don’t have to be alone, right now best I could say is time, let yourself be angry, sad, everything but don’t let yourself be convinced all you are is your ms. I did and because of that I missed years of schooling, now I’m a college student living my life as best as I can despite the hard days that can come along I’ve learnt to work along side the MS and not against it. If possible you could try requesting your hospital for therapy to help you cope along with it? I did it for 2 years and it’s taught me a lot and helped me talk through it, support is out there people may never truly understand what it’s like but there’s people out there who will and others who will stay by your side no matter what :)!
Wow its really weird hearing that someone my age is experiencing the same thing after so many doctors and other people have been shocked that i started showing flare ups so young as 14.
I reallt do hope that youre dealing with everything well, this all came up right in the middle of my a-levels so the stress of getting them done whilst being in hospital made everything a lot worse for me but my teachers made sure my health was first priority and now all my exams are done ready for uni in September and ive never been happier.
I have so many doctors appointments coming up about therapies and medications so hopefully at those appointments i can talk about how im really feeling and get more support.
Thank you for your message i really appreciate i, it was so sweet of you and i hope you and your family are doing okay through this unfair time.
If you have any social media or even just a phone message id love to get to know you a bit more so we can both have eachother to talk to if we ever need it, thank you again for your kindness x
I could fully imagine how weird it must feel even these days I still get a shock finding others my age with MS and I wish the best for you and all your family too especially in such early stages of diagnosis i could only imagine how hard it must be as of recently, I’m happy to hear that you’ve managed to push through and complete your A-Levels that’s a huge accomplishment for anyone and especially dealing with MS ontop of it! Id be more then happy to hand over social media’s to get more in contact especially during these times of so many appointments coming up I could imagine the possible stress and need of some kindness and similar understanding so no need to say thank you ! Please feel free to let me know any media’s you’d prefer to get in contact with and I hope to get to know you more!
You’re actually the sweetest and thank you so much i really do appreciate it. I’d love to get to know you a lot more so we both have someone to turn to if we need it.
I’m okay with snapchat or instagram or anything like that just let me know which is best for you!!
I myslef have learnt a lot these past years and if your ever wanting to talk to someone of similar age with a understanding of MS please don’t be scared to contact me! It’s a horrible time right now and you don’t have to be alone, right now best I could say is time, let yourself be angry, sad, everything but don’t let yourself be convinced all you are is your ms. I did and because of that I missed years of schooling, now I’m a college student living my life as best as I can despite the hard days that can come along I’ve learnt to work along side the MS and not against it. If possible you could try requesting your hospital for therapy to help you cope along with it? I did it for 2 years and it’s taught me a lot and helped me talk through it, support is out there people may never truly understand what it’s like but there’s people out there who will and others who will stay by your side no matter what :)!
and I wish the best for you and all your family too especially in such early stages of diagnosis i could only imagine how hard it must be as of recently, I’m happy to hear that you’ve managed to push through and complete your A-Levels that’s a huge accomplishment for anyone and especially dealing with MS ontop of it! Id be more then happy to hand over social media’s to get more in contact especially during these times of so many appointments coming up I could imagine the possible stress and need of some kindness and similar understanding so no need to say thank you