Hi there, You are so right about 'Tumefactive MS' being rare, I couldn't recall anybody here dx with it, so I went searching the net for any other MS sites talking about this but there really isn't much out there.
What i could work out from what little was available [please don't quote me], the lesion(s) are larger than typical in MS and are more tumor like in appearance, it sounded like they had a sort of donut shape because of a dark centre giving the lesion that look. The few talking about their experience, all seemed to mention both an MS neuro and a brain tumor neuro/surgeon being involved in the dx, some got dx after biopsy of the lesion and others the lesion was MRI observed over time.
The sx's seemed to be a variable like other types of MS and I did read something about a 4.6yr average between relapses and a few people saying they were told its a slower course but sorry i couldn't pin down if that idea was research based or personal experiences. MS World mentions links to a couple of articles that might be worth getting your hands on, not sure how helpful they would be but they might be good to read.
Sorry I couldn't really be of help, I'll keep my fingers crossed that your question brings a few dx with Tumefactive MS to our boards and you'll get some better feedback!
Thanks so much for your responses and research. And Mike - by UBC do you mean univ of british columbia? you are a fellow canadian?
anyways, i am surprised that your neuro didn't mention tumefactive ms as my research says, that is the type for larger lesions. Do you have any other lesions (smaller?) anywhere?
I am thankful that i did not need a biopsy. the neurosurgeon said it was not a tumor so by default, more than likely it is an ms lesion as i have a couple small ones as well.
I am hoping my new neuro ms specialist will have more knowledge on this type of ms because like you JJ, i did read as well that it may not be a bad form (ie, many years between relapses and not overly progressive) - so that's all good news - there is more cognitive problems associated however depending on where it is ... but again, not sure if this is research based or people's observations.
mike, you can find more info at http://www.tumefactivems.blogspot.ca/p/about-us.html
No two cases of MS are exactly a like. There are two things happening inflammation and nerve damage. It all depends on where the inflammation or damage is as to which part of the body is effected. I have had MS for almost 48 years but is is very slow in progression. When I am around other MS patients I almost feel like I do not belong. I have many MS issues but I am so used to them. I guess I am lucky becuase I have known nothing but MS symptoms in my life and my progression is so slow.
just following up with you about your tumefactive MS ... where was your lesion located? My neuro wants to send me to a neurosurgeon to look at potential of biopsy but it's in my frontal lobe so they are concerned about that.
My boyfriend has just been diagnosed with Tumefactive MS, his family and friends all want to know more, like we do, which we don't. Anyone know someplace to contact to get some layman's information on this topic.
Hi nevadennay - I'm sorry to hear about your boyfriend's diagnosis.
As others have said here, info on tumefactive MS is pretty scarce. I did a little looking and came away with the impression that what differs tumefactive MS from plain old MS is the lesions. In tumefactive MS the lesions are larger than normal and have the appearance of tumors.
THis is why there is talk of biopsy in conjunction with tumefactive MS. They need to make sure that the lesions that look like tumors aren't really tumors.
We may have some here with TMS experience. Because TMS is really MS, except for lesion size, feel free to ask us lots of questions.
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