Hi, I've been in and out of limbo for fourteen years. I've had optic neuritis twice which led to optic atrophy. I have spastic paresis and ataxia. 2001, I was told ME, then MS. I was with an MS specialist for four years and then discharged with we know something is wrong we just can't identify it.
I was then told probable progressive MS. two years ago. I was then given a probable diagnosis of a hereditary neurogenetic disorder which meant there was a 50% chance of my daughter having it. last year after a meeting with a neuro opthalmologist and a neurogeneticist they felt it was neuromyelitis optica. Blood tests came back OK so now I'm having a muscle biopsy and on the hereditary disorders search again.
I've been on different forums over the years and met many people in limbo who were assessed initially for MS. Different people have been diagnosed with various things such as SLE, Bechet's, hereditary disorders, subacute degeneration of the spinal cord due to b12 defficiency, neurosyphillis, HSP, PLS. stiff person syndrome and many others.
many of them struggled to get the right diagnosis but as they lived in the USA diagnosis was quicker.