Tumefactive MS

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Tumefactive MS

Postby Lars » Mon Dec 17, 2012 2:54 pm

Hi all,
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?
Be Well,
Lars
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Re: Tumefactive MS

Postby euphoniaa » Mon Dec 17, 2012 4:04 pm

Lars wrote:Hi all,
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?
Be Well,
Lars

Hi Lars,
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... :smile:

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!
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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