euphoniaa, have you seen our Facebook page about Tumefactive
MS? We'd LOVE to have you join us! I actually just shared a link to this thread, because I thought it was so interesting. Hope you are feeling well these days!
If you want to join our page, just search for Tumefactive
Multiple Sclerosis on Facebook!
I'm sorry it took me so long to answer, but I've been a little busy with work (full-time) and doctor visits lately (totally unrelated to MS) and I wanted to do a little more investigation before I responded. You're the first person who replied to the "tumefactive
" content in this thread at all. Which was kinda like the same sorta non-response I got about the term from my doctors - even my neuro.
In fact, I recently mentioned it to the surgeon who's reviewing all my records before he does a couple of procedures on me. When he pulled up my brain MRIs, I pointed out that one was termed "tumefactive
." He shrugged it off with the response, "Myeh, I've seen bigger."
I think I've found your blog, though, where you've posted lots & lots of info and links about Tumefactive
MS, but I have to say that I have not
been diagnosed with it. Although my MRI report notes a "tumefactive
lesion," in my case (as I reported above in the thread), that just seems to mean it's big, and it doesn't appear to have any other unusual characteristics, no enhancement, very little change over many years.
I read much of the info on your site, but didn't click on all your "source" links, however, because they don't show what sort of sites they're leading to; I don't click unless I know whether links lead to Research Journals, commercial sites, personal blogs, etc. I crashed my brand new computer by doing that and had to have it rebuilt.
From my own short research before, it seemed that Tumefactive
MS as a 'diagnosis' was synonymous with Marburg variant MS, which is extremely
aggressive and thus, it's possibly a different disease entirely. In contrast, your more extensive research has uncovered much more treatable and manageable versions of Tumefactive
MS. It’s great to hear that!
Considering that I’ve likely had at least 40 years of mildish, slowly progressing MS, with many other lesions showing ‘classic’ presentations, I don’t seem to fit in there anywhere. But I don’t know either. I still can’t figure out why my neuro calls me RR when I’m only progressing. Don’t care, though. I can’t identify a single incident that I can name in 40 years as an Official MS Exacerbation. Don’t care about that either. Don’t know why it matters to officially name them.
Best of luck to you. Feel free to go ahead and post a link to your blog here or add information, since this thread may attract others who are searching for info.
And I'll end with a couple of links & quotes from them. I offer major apologies for resorting to Wikipedia for info, but this is what people are getting when they google Tumefactive
MS. Feel free to correct any misinformation. http://en.wikipedia.org/wiki/Tumefactiv ... _sclerosis
Tumefactive multiple sclerosis or pseudotumoral form, is a condition in which the central nervous system of a person has multiple demyelinating lesions with atypical characteristics for those of standard multiple sclerosis (MS), including a size greater than 2 cm, the presence of a mass effect, edema, and/or ring enhancement.
These atypical characteristics can mimic other diseases and lead to misdiagnosis, and may require brain biopsy for diagnosis. One Mayo Clinic study found that 6% of all lesions with T2 hypointense borders on MRI were in fact tumefactive multiple sclerosis lesions. The more common pathologies included gliomas (40%), metastases (30%) and abscesses (8%).
Normally tumefactive MS is considered a synonym for Marburg MS. Tumefactive MS lesions are in fact real multifocal MS lesions together, but this can only be proven through biopsies or autopsies.
My lesions didn't lead to biopsy because every other test led to plain ol' MS instead.
And about Marburg from Wikipedia:http://en.wikipedia.org/wiki/Marburg_MS
Marburg multiple sclerosis, also known as fulminant multiple sclerosis, is considered one of the multiple sclerosis borderline diseases, which is a collection of diseases classified by some as MS variants and by others as different diseases. Other diseases in this group are Neuromyelitis optica (NMO), Balo concentric sclerosis, and Schilder's disease. The graver course is one form of malignant multiple sclerosis, with patients who reaching a significant level of disability in less than 5 years from their first symptoms.
...Currently, Marburg MS is considered a synonym for Tumefactive MS.
And this is from the British Journal of Medical Practitioners:http://www.bjmp.org/content/tumefactive ... -sclerosis