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.
The Content on this Site is presented in a summary fashion, and is intended to be used for educational and entertainment purposes only. It is not intended to be and should not be interpreted as medical advice or a diagnosis of any health or fitness problem, condition or disease; or a recommendation for a specific test, doctor, care provider, procedure, treatment plan, product, or course of action. Med Help International, Inc. is not a medical or healthcare provider and your use of this Site does not create a doctor / patient relationship. We disclaim all responsibility for the professional qualifications and licensing of, and services provided by, any physician or other health providers posting on or otherwise referred to on this Site and/or any Third Party Site. Never disregard the medical advice of your physician or health professional, or delay in seeking such advice, because of something you read on this Site. We offer this Site AS IS and without any warranties. By using this Site you agree to the following Terms and Conditions. If you think you may have a medical emergency, call your physician or 911 immediately.