Connect with others who understand.

sign up log in
Resources
About MyMSTeam

Connect with others who understand.

sign up log in
Resources
About MyMSTeam
Real members of MyMSTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Has/is Anyone Dealing With A Diagnosis Of Tumefactive MS?

Has/is Anyone Dealing With A Diagnosis Of Tumefactive MS?

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

posted April 26, 2013
A MyMSTeam Member

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?

posted May 18, 2017
A MyMSTeam Member

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

posted May 20, 2013
A MyMSTeam Member

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.

posted May 17, 2013
A MyMSTeam Member

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.

posted April 28, 2013
A MyMSTeam Member

Was it that they thought at first you had brain cancer? I googled it and found that it is a rare form of MS, seems to be treated in the same way as the other types.

posted April 27, 2013

Related content

View all
I Was Diagnosed With Tumefactive Ms In March. Does Anyone Know Anything About Or Been Diagnosed With It?
A MyMSTeam Member asked a question 💭
Navigating The Site
A MyMSTeam Member asked a question 💭
Weakness On The Right.What Is A Good Diet Or Thing I Should Eat?
A MyMSTeam Member asked a question 💭
Already a Member? Log in