Limbo again

Hi Im Charlie im 39, for the past few years ive had symptoms that point to ms. My GP referred me in 2022 to neuro. Had bloods and Mri. All was clear apart from my auto immune marker. Before I had MrIs I was diagnosed with fibromyalgia. So neuro said oh its just your fibromyalgia so just cracked on.

Fast forward to Jan 2026. In my opthalmology appointment my consultant looked at my left eye explained my issue like a water mark/ black blob in my sight. Did a few tests and he sat back and said has anyone mentioned Ms to you. I nievely said oh yeah I had the all clear 4 years ago. He then said im sending you for MRIs and blood work and referring you to neurology, You have optic neuritis.

I was just wondering if anyone else has had this happen? Also im probably not going to see a neuro for a long time as in Wales and the waiting list is shocking.

Symptoms

Appart from water mark in eye, double vission, stabbing pain in eye.

Numbness in left hand

Feels like im being weighted down when I walk

Chest pain like someone’s tightening a courset as tight as they can (been to a&e all seemed fine not heart attack)

Cramp in hands and feet

Feeling that my legs are swollen they look fine but feels as if ive hand anaesthetic injections in my legs.

Sorry its a long one thanks for reading just seem lost. As im back to square one with it all.

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Oh dear, I am sorry that you’re well and truly back in limboland.

I am very glad to hear that the ophthalmologist has ordered an MRI scan. Let’s hope that’s speeds up the process of finding out what’s going on here.

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Hello. I am currently in a similar situation; given the all clear in 2022/2023ish and now have been referred back after some visual problems and numbness. The anxiety over the waiting for MRIs and results has come back.

Is there any possibility of you having a private consultation with a neurologist once you get your MRI scans done? That’s what I’m planning to do once the scan results are ready.

Sorry I can’t offer more help, maybe some solidarity will help.

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