Anyone have some common sense, layman terminology for Tumefactive MS. Keeps coming up in my radiology reports and its freaky as hell. My Neuro is kinda brushing it aside. Thoughts anyone?
I'm sorry you're dealing with that! A while back I posted a thread of my own trying to find out more info about the term, although my MRI reports only note I have "tumefactive lesions" rather than "Tumefactive MS." I'm not quite sure the difference, and I posted a few links on my thread that didn't really explain it all that well either.
Here's the thread link, a couple of pages back here in the forum: general-discussion-f1/topic16335.html
All of my docs just shrug it off when I've mentioned the term (see that thread), and in my case tumefactive just seems to mean "big." My thread got very little response, especially about the term "tumefactive," although someone recently bumped the thread and said there's a Facebook page about Tumefactive MS. I'm still not sure what it all means. But then, my brain is cluttered with tumefactive lesions...
Thankfully, quantity & size of lesions and length of disease (40 years for me) doesn't necessarily correlate with prognosis, symptoms, disability, or much of anything. I'm doing pretty well, still work full-time. Let me know if you do find out more info.
Wishing healthy, happy brains to all!