I’ve just made an account after finding this forum, as I could really do with some support. I’ve been recovering from inflammatory demyelination in the medulla with unmatched oligoclonal bands and I’ve been given the diagnosis of CIS.
I’ve been told that any more inflammation will lead to an MS diagnosis, and I’m meeting the MS team every 5 weeks, as well as having MRI scans every 6 months. Even though CIS doesn’t always lead to MS, my consultant sounded pretty certain that this would be the case, and they’re just waiting for another inflammation before officially diagnosing me.
I don’t know how to feel at all. It’s been about 10 weeks since my initial symptoms started, and 7/8 weeks since I left the hospital, and even though I feel better, I still struggle to walk, I have diplopia and double vision from about 30 cm away, and I feel like I’m in constant pain and fatigue. I don’t feel like I’m ever going to be better again.
I suffer from mental health anyway, but recently I just feel so helpless and scared. Anytime I get a mild symptom (even if it’s just a cold) I can’t sleep or eat in worry that it’s a relapse.
I’m terrified, I’m supposed to be starting a new University course to train to be a teacher in September, but I don’t think I am going to be well enough if my condition does not improve, but then I’m equally worried that if I don’t study I won’t have any income (from student loans and bursaries) and if I can’t study, I definitely won’t be able to work.
I just need some advice, how do I continue knowing that at any minute I could relapse, and how do you decide whether to put health or career first. If I knew that I would get better in a month or two I could stick through it, but what if I never get better? What if I continue to feel this awful forever?
I’m sorry for rambling, I’m just really scared. I go through the ups and downs of feeling okay and then crying in bed. I just don’t know how to accept this diagnosis and move forward. Any advice would be greatly appreciated and even if you have just read this thank you for your time.