Forum

ms members serious please read i need your advice please reply

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

This is just a suggestion, but if I were you, I would wait for the letter from the consultant and then go and discuss everything with my GP. It could be that the neuro will say what he thinks is wrong in the letter in which case you will be able to find out everything about it. If he doesn't say what it is, then it might be a good move to see someone who specialises in genetic conditions as there are several genetic conditions that can cause symptoms like MS. They may or may not find anything, but (most importantly?) you will find out the risk for your children.

Really sorry it was all so distressing letdown

Hopefully the letter will explain all, but if not, I hope you don't have too long to wait for some answers.

Karen x