Diagnosis
Hi everyone, my name is Taylah and this is my first post on here.
I’m not officially diagnosed with MS, but I’m currently undergoing testing after being diagnosed with optic neuritis in my left eye.
It all started with a persistent headache and blurry vision in my left eye, which led to hospital admission for further investigation. My MRI has shown lesions that have raised the possibility of MS, and I’m currently waiting for results from further MRI scans, blood tests and a CT-guided lumbar puncture.
It’s been a pretty overwhelming and uncertain time, with lots of tests and questions and I’m still trying to process everything. I know I don’t have a confirmed diagnosis yet, but I thought joining this community might help me learn from others who have been through something similar.
I’d love to connect with people who have experienced optic neuritis, been through the process of investigating a possible MS diagnosis or are navigating that uncertainty themselves.
Hi 👋, I don't have any experience of optical neuritis but have been officially diagnosed this year after a lengthy journey (8yrs since first referred to neurology). I knew it following my second symptom however it took for my first major relapse for a diagnosis to be established. Reason I share that is that ut may feel massively scary right now but 8yrs in, I've come to terms (didn't take the whole 8yrs 😉). Things I found helped me: Research and ask everything. Whilst everyone's journey is unique, knowledge is absolutely power. Your life isnt over! I've also turned 40 this year and whilst it started with my first major relapse I have had the best year of my life with so many laughs and memories made. Don't discount the people around you. Life is really tough for lots of people right now, there are not many genuine d*cks in the world, just a group of people trying to do the best they can with what they have. They may not have the capacity to hear or deliver against your needs in the way you want or expect but (most) people do care! The amount of messages and posts I see about loneliness on here is heartbreaking. Live as light and bright as you can! Yes you have a disease, I'm having a bed and trashy telly day today as im exhausted 😴. That said, I do the best I can with what I have ro give each day and dont take myself to seriously. Like my diet, if I have a day when I fail on these views (and I do) I start again the next. Move, move and move as often as you can for every part of your body that you can - it really does help. I lost use of my right hand in my last relapse and id say im about 95%+ recovered as I did a series of hand and finger strength building exercises for a couple of hours every day. I genuinely believe I wouldn't have recovered as I have without putting the work in. I really hope that helps you in your journey. Your body has changed - life doesn't have to
I had optic neuritis as one of my first symptoms (over 35 years ago). MS can be quite tricky to diagnose but I hope they manage to help you. This is a great community - very friendly & knowledgeable - always someone who knows what you are going through. Hopefully you will have relapsing/remitting form of MS so symptoms tend to clear after a while. Try not to panic too much - I have lived a full, active life - busy with a very stressful career & MS didn't hold me back until the last 5 years or so. Everyone's MS is different so try to stay positive. I have always believed a positive attitude really helps. I would write a list of all the places you want to go, things you want to do etc and start doing them! Stay strong & all the best.