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Tired and fed up already! (In limbo)

Hey everyone,

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.

I’m probably not much help but have they looked into something like fibromyalgia, Lyme disease, CFS/ME. There’s so many things are can mimic MS that wouldn’t show on an MRI