In Limbo

Last updated: June 2022

Hi, everyone. My story started approximately 25 years ago when I was hospitalized with the worst headache ever. The docs thought it was meningitis at first. I spent three weeks in the hospital with no real answers then I was discharged!

A few months later I had a brain scan and a lumbar puncture, which showed some demyelination, a cyst, and a rare form of migraine. The neurologist told me that it was possible to end up with full-blown MS!

Anyway, I've been in limbo regarding the MS and haven't been told which type of migraine I have, just that it's a rare one. Recently I've been much worse and just need some understanding and information as I've been let down by the system here in the UK.

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