Had a neurology appointment last month, brain MRI a few weeks ago and a VER test last week after neurologist suggesting a differential diagnosis of possible demyelination. Received a letter the other day noting that my brain MRI was normal. Still haven’t had VER results back yet so no idea about follow on appointments or next steps. Obviously a clear brain MRI is fantastic in comparison to the alternatives but unfortunately it doesn’t make what I’m experiencing go away.
Saw the GP last year about fatigue and frequent urination/urgency/inability to empty my bladder and really didn’t get anywhere - low vit D and low iron so given some supplements and sent on my way… A couple of months ago the right hand side of my face started tingling very suddenly so was sent straight to hospital to rule out stroke, when I was discharged the next day my right arm and leg were also crawling/tingling/burning - the arm and leg haven’t stopped since. Vision in my left eye just isn’t right, blurry and spotty. I’m fatigued, I’m fed up, I pee like a racehorse and I’m really thankful that I haven’t lost function but I feel like I’m going mad. It may not be MS, but it’s got to be something surely? I think I just need the control back of knowing what’s happening and how to manage it, but with a clear brain MRI I’m not sure where they’ll go next. Neurologist suggested a lumbar puncture dependent on results. I respect the NHS massively, I just don’t know if I have the energy to advocate for myself as the process draws on.
Apologies for the long post which pales in comparison to most people’s journeys - I know this is a process that takes years for some and it’s really inspiring to see so many strong and knowledgeable people on here.