Hi Pippa86, your situation is very similar to mine. I had ON in January this year and also experienced unbelievable fatigue, brain fog, numbness (I actually picked up a hot tray out of the oven and couldn’t feel it) and reduced feeling in my legs. My right hand side was worst affected. The hospital eye clinic referred me to a neurologist when I was diagnosed with ON. They also ordered an MRI of my brain and eye. I saw the neurologist really quickly (before I even had my MRI scan). He also ordered me an MRI of my cervical spine too. He did an assessment on me, listened to my symptoms and although I hadn’t had a scan he told me he strongly suspected I had MS. He was expecting my MRI scan to light up like a Christmas tree and that it would be a simple diagnosis. He even said he’d give me a call to discuss the results when they came through (I’m under NHS!)
however, only the scan of my eye showed damage, my brain and spine were deemed as normal. I also had blood tests done too, have you had these done? They can help rule out Lymes etc.
I’ve since seen the neurologist another 2 times and he’s ordered further MRI scans to see if there’s any change and I’ve also had my thoracic spine done too. He says that hopefully i will just stay at CIS but he says my risk of another episode is possivld and if it does happen, a diagnosis would likely follow. It might just be a case of waiting for it to show. But it also might not happen.
i can honestly say between Jan - May was awful. I felt useless and wondered if I’d ever be able to go on long walks again like we regularly do as a family. My walking is now so much better and the fatigue has lifted. I’m still not back to how I was feeling before. My legs are still not 100% and I have regular spasms. In the time I felt at my worst, it seemed that time dragged and being in limbo completely consumed me and I struggled to see the way forwards without any official diagnosis of anything. Although I’m still not feeling my normal self and I still can’t get back to running, I’ve stopped letting it consume me and I just think what will be will be. I never wanted an MS diagnosis, just an explanation of what was wrong. I’d of been most happy with a diagnosis of ‘x’ and take 2 tablets a day for a week and you’ll feel back to normal (I think that’s what everyone wants!).
I think it’s definitely worth being referred to the neurologist but the best advice I ever got from this group is don’t expect answers quickly or sometimes even answers at all. Write a time line / diary summary of your symptoms to take with you to your appointment. Wishing you all the best.