Hello. My name is Carolyn and I have Devic's disease. I know that's not strictly MS but this is as close as I'm going to get to a support forum - there's precious little out there for my condition because it's so rare. I have had it since 2004 and I only got diagnosed in 2010. I've only ever had 2 doctors, out of the countless ones I've seen, that didn't immediately say 'Devic's disease? What's that?' It's frustrating.

I'm currently stuck in hospital (day 5) waiting for an MRI after my left leg stopped working 5 days ago. I have a new foot drop now and am suffering excruciating back pain - an ongoing condition that was previously chalked up to a bad back, but now I'm told might be demyelination-related. That would explain why it was so hard to treat but if it means my disease burden is increasing...