Hi - first time posting here and am at a bit of a loss so hoping someone can relate to my experience and maybe share some advice.
I’ve been dealing with on-and-off symptoms since 2024. Two major flare ups of upper limb/hand numbness about a year apart, the latest of which started in August 2025 and keeps flaring back up if something runs me down or if I get too hot. It had disappeared for the most part early in 2026 then I came down with a cold which brought it back and it is now persistent again. I’ve had other symptoms which I’m not sure are MS because it’s really hard to know if brain fog and fatigue are from this or just things I’m generally experiencing because of life.
I also had some eye issues (random blurred vision with no real trigger) that coincided with the numbness timing that totally disappeared of their own accord but I’ve been told it’s likely unrelated as my VEP came back clear. The blurriness has since come back but for short periods when I’m under significant stress (e.g. at the airport).
I’ve had two MRIs privately, one with contrast. They showed 2 lesions on my cervical spine. I’ve also had a lumbar puncture which showed oligoclonal bands in my spinal fluid. Blood tests for other things that may on the surface present as MS came back clear.
My private neurologist was fairly certain I was looking at an MS diagnosis but that he couldn’t formally diagnose me and would need to refer me to the NHS. My NHS neurologist has told me I don’t meet the criteria for a diagnosis because I don’t have lesions on my brain and I’ve been left in a grey area now needing to get another MRI and hoping they find more damage than was previously seen.
I’m here to see if anyone has been through this and whether you have any advice or guidance?
I was really hoping for some answers from my NHS appointment but am now left scared that it’s expected I just have to wait for it to get worse before they’re willing to help me.