12yrs to get to a ms speacilist and we crashed and im in a mess, the consultant was very honest and thorugh he accepted i had significant CNS disease but with no lesions and one clear evoke potential he says no to ms but a rare CNS disease that mimicks ms despite previous consultant neurology i have epilepsy he says they have been barking up the wrong tree and explained that unless you see a patient with a rare CNS disease you don’t have a clinical understanding or diagnosis process. we fully accepted this but now im here for help as to what it maybe or were i could go for info i have two kiddies and they are most worry we have no idea if this is hereditary and passed on and what the prognosis for me and if the disease as woke anything else up it could take months for him to find a hospital and consultant who speacilise in this field. Me and the hubby are numb and are concerned as to the outcome
hazexx