I have recently been diagnosis with Tumefactive MS. I found this out after reviewing my own MRI. My neurologist explain it to me in a very simplified manner. It was summarized with "we'll watch you more closely because your MS is more sever." There is very little information I can find on it because it is so rare. Only .1% of MS cases are Tumefactive MS. Right now I am not having any difficulties but what does it mean for my future? Any information shared regarding this would be tremendously… read more
I have one yay. My neuro is talking about like it's MS and although it's a large lesions and we will treat with Gilenya..... it's highly likely I may not have any more problems.... but today's meeting the focus was back on holding off treatment until we can be sure it's not a tumor or something else. What steps did you have to do to rule out everything else?
No I haven't heard of it but we can talk if you want, I was diagnosed at age 20. I am 32 now but can relate to the "young" part of figuring all this stuff out. It wasn't until about 4 years ago that I learned more about the natural ways to deal with stuff. I'm trying to compile some of my most useful links on msdiagnosis dot info
DMC: I don't know any thing about Tumefactive MS other than what I read on Wikipedia. It was actually Gina who was diagnosed with it. I had to Google it.
I knew I had RRMS before they knew it was Tumefactive MS. I was told that my lesions were evolving after my last MRI. I am trying to figure out if the prognosis is any different than RRSM since I am so young.
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