Hey everyone! Just wanted to introduce myslef and my short “story”. I’m 22 and before I turned 21 I was diagnosed with relapsing remitting ms. Plus the pandemic this year has surely been a rollercoaster for me. I have always been healthy until I’ve started to see very foggy from my left eye. At first I wasn’t paying too much attention but then it got hard for me to drive so I went to the GP to get it checked. He immediately sent me to the neurologist department and so my journey began. MRIs, evoked potentials, blood tests, steroids, lumbar puncture… got the whole package. At the end l: surprire you have ms! Happy birthday! Jokes asides, I was lucky enough because it had been caught early (I had like 10 tiny lesions on my brain only) so I could start to cure it early and I haven’t had any symptoms since the episode. Not bad! Still it was very traumatic, I think the younger you are when being diagnosed, the more devastating it is somehow! Especially for your family! And I think the feeling of being a tickling bomb ready to explode never actually leaves you. And it’s also quite isolating because it’s hard to talk about it with my peers because they don’t understand unfortunately, although some try to and sometimes that’s more than enough! Besides that, I try to work out every single day, I take vitamins and magnesium and try to be healthy. It kinda works for me. I always joke that it took me an uncurable disease and a whole pandemic to finally start to exercise regularly! How is it your experience being diagnosed with ms and living with it? I’d love to hear your experience as well. It’s always precious to hear other people experiences. Thank you for reading and immensely thank YOU if you comment! Sara_
I was recently diagnosed at 37 but my first noticeable episode was at 32 so i felt very hard done to. For you it must be even worse. I agree with the ticking time bomb analogy and it is one of the things that i have struggled with the most - loosing that assumption that nothing bad will ever happen to me. However, having spent A LOT of time reading about the condition over the last 6 months, including what is in the pipeline (treatment wise), there is a lot of cause for hope and catching it early is critical as you say. Are you starting a DMT shortly? a piece of advice. Dont necessarily take everything that your nuero says as gospel. They may be fantastic. Some though, it seems, aren’t that great and you may need to fight your corner a little bit when it comes to access to treatments, regular scans, appointments etc. This forum is a great starting point. Ask anything, post often - you will always get a response. Good luck!
Hi Sara, I was diagnosed last year with SPMS. looking back i had my first symptoms when i was a similar age to you, however it wasnt diagnosed until 20 plus years later. The plus side is that i have lived without knowing i had MS and i havent really suffered too badly - only odd symptoms which have cleared up quickly or not really enough to bother me. The down side is that now its too late to start regular DMT so i am now waiting for a newly licenced medication to be available hopefully in march.
My advice is not to focus on MS, but there is always help and advice if its required. Start DMT and keep healthy, live your life for now - dont put off something you want to do.
Hi Sara, I am sorry that MS has got you at such a young age, but I am pleased how you are handling it and staying fairly well.
I just want to point out something you say early on in your post ie…
you could start to cure the condition early…
but later you mention getting an incurable disease…
I guess you know MS is incurable…just wanted to make that clear, incase any other newbies are wondering.
I wish you well for the future.