About Us

Who are we?

We are a fun (sometimes crazy!) group of more than thirty individuals living with Tumefactive MS! We come from all over the world, including Canada, UK, USA, South Africa, Australia, New Zealand, Israel, Slovakia, and more! Together, with our neurologists we are each battling this extremely rare and complex disease called Tumefactive Multiple Sclerosis. We met online through a facebook group (http://www.facebook.com/TumefactiveMultipleSclerosis ) and quickly learned that some of the craziest, most confusing things about our cases, we actually have in common!

Our stories vary widely, and we plan to share several of them with you. Tumefactive MS is not a kind disease, and many of us have faced extreme disabilities, paralysis, blindness, difficulty speaking, and several other complex neurological symptoms. When Tumefactive Multiple Sclerosis hits, it often looks more like a stroke or a tumor than Multiple Sclerosis. A "Tumefactive" lesion is a brain lesion that is larger than 2cm, and is often indistinguishable from a tumor, glioma, lymphoma, ADEM, stroke...the list goes on! Many of us required biopsies to get a diagnosis, and sadly, several from our group even had brain surgery before being diagnosed with this rare form of Multiple Sclerosis.

Why are we here?

We are here to share our stories. We are here to introduce the world to Tumefactive MS, and to connect with others who are facing this diagnosis. Many of us spent years facing this diagnosis alone, with little to no information about Tumefactive MS. We are here because we want to change that. We hope that by sharing our stories, others with Tumefactive MS will have a source of information and a group of friends to turn to for support. 

 In addition, we also want to introduce the greater MS community to their "cousins" with Tumefactive MS, and hopefully provide valuable insight to patients, physicians, family members, and researchers who are interested in Tumefactive MS. 

Join Us! 

We invite you to join our discussion on Facebook at:  http://www.facebook.com/TumefactiveMultipleSclerosis  **Please note that many of our detailed discussions occur in a private facebook group. If you have Tumefactive MS, or if you have a family member with Tumefactive MS, please let us know that you would like to be added to our private group!

If you have questions, comments, or ideas for this site, please leave comments below or bring them to our Facebook page!