Hi, I’ve just been given a diagnosis of CIS following optic neuritis last year. I had a mri which showed 3 brain lesions and one spinal last year and a year later the scan hasn’t shown any more. Also had a negative lumbar puncture. It’s not as if I wanted a diagnosis but I have been living with symptoms for years now and it is affecting the quality of my life. I’m not sure where to go from here should I ask for a second opinion? Could it be something else that is causing my symptoms? I feel like I’m going to be living in limbo forever now with the possibility of being diagnosed in the future. Has anyone else had this and can offer me any advice on how to cope with this?
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Hi Scarlet, 
You may be on this Donkey for a while now so, you may as well learn to ride it 
My main symptoms started in 2023, possibly the 90s. I was also diagnosed with CIS in 2024 then, given a double whammy of RRMS and epilepsy diagnoses around February this year. They first found 2 large brain lesions and a small one. No spine lesions. I had 2 lumbar punctures that showed nothing. From what I could figure out, CIS seemed to be a holding pen for when they’ve found something and they’re pretty sure of what’s going on but, it could still be caused by something else. It’ll feel like a long time while you’re going through tests and having other assessments in between. I was even tested for HIV &Syphilis and, had a cognitive test and lots of other tests at the eye unit.they have to be very thorough before a lot of very qualified people confirm your final diagnosis then, look into any ongoing treatment plan with you. You’re on their radar so, they will get to the bottom of what’s going on but, it won’t happen overnight.
I found that a lot of people don’t have a clue about CIS, especially my old employer even though I’d let HR know.
For now it’s worth keeping notes of any symptoms as they happen - it will help in your next meetings.
It’s also a good idea to take care of yourself by eating and sleeping well.
Try to keep your mood up. The things that helped me was reading as much as I could about what was going on and what may be coming. I also kept it in my mind that I may have MS but, so far I hadn’t so, happy days.
It may be hard to see the silver lining on your cloud but, it is there if you look hard enough, I promise
… I’m partially sighted and, I bump into things but, at least I can get around to bump into those things. There’s good folks that have lost that ability. It won’t always be easy but, a little positivity will help to carry you along.
All the best mate x
Jon.