please read. i need advice

[baffled]

hello i have ms for 12yrs and finally got an appointment with a ms specialist and even though 5 previous consultants say ms even though i dont have lesions he said no its not ms, but a rare CNS disease. The only thing he agreed with was that due to evidence by other medical proffesionals it was advanced. I have two kiddies one as aspergers and both pregnancies were high risk and almost lost them i now dont know if i have passed it on or what the outcome is and he doesn't know how long it could take to find my new specialist as in the uk they are treated in specialist units, not your local neuro clinic. We have no idea what we are facing or the outcome i ask please does anyone have any idea what it maybe i have all symptons of secondary ms and writing it all down i would here till next week

hazexx

[TheBeans]

A rare CNS disease? Did he tell you the exact name of whatever this disease is...that would be my first question. Once you have that disease's name you can begin searching out information about it on-line. Seems to me that if it's so rare, then the pharmaceutical companies would be hammering down your door to give you free drugs, in order to get their names out there for treatment of it. Or, better for you, you'd have some specialists looking for you for the same reason!

Hope things shake out for you. Keep us posted, ok?

[jazzgirl]

Sorry you're having so many problems, Hazexx. A couple of questions for you, if you don't mind. Did you ask what "rare CNS" disease he was referring to, and what makes it "advanced"? What do they plan to do about it?

It's a lot to process, I'm sure...

[baffled]

hello

i have spoke to my ms nurse today and she confirmed that there is other forms of ms not primary or secondary and there is also another two CNS disease which minick ms progressive, i asked how and what they could be and here is were you may be able to help. In the uk London at the moment and maybe Liverpool are the only units that treat and deal with rare disease and to research them. The other interesting fact was they do know that my disease is not that well know in the uk hence the confusion so they requested help from the states in New York im not sure were ,there are letting me know if they are in the right place so i don't get to hopefull. Me personal i think the are fibbing i do know through the ms society there is other forms of ms but they are found in other countries so i ask being in america and worldwide could you help. What they say was my brain and spine CNS is inflammed and signals for my body to function is not getting through most of time and if does it gets it wrong massively.

hazexx