Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
This community is a place where members can discuss current events and weigh in on what's going on in the world.
Tumefactive demyelinating lesions are generally thought of as solitary lesions, greater than 2 cm, with imaging characteristics mimicking neoplasms. These lesions more commonly occur in women with an average age of 37 years [1, 2]. With rare exception, the tumefactive demyelinating lesions do not originate as a postinfectious or post-vaccination response. Although the exact pathogenesis is not clearly understood, most patients respond favorably to corticosteroid therapy and do not progress to multiple sclerosis [1]. Symptoms are generally atypical for multiple sclerosis and usually relate to the presence of a focal mass lesion: focal neurologic deficit, seizure, or aphasia [3]. Without a history of multiple sclerosis, the clinical presentation and radiographic appearance of these lesions often lead to biopsy.
In a review of 31 cases, Kepes [1] proposed that tumefactive demyelinating lesions represent an intermediate lesion between those typically seen with multiple sclerosis and acute disseminated encephalomyelitis. Pathologically, these lesions are indistinguishable from typical multiple sclerosis plaques and are characterized by infiltrating foamy macrophages intermingled between reactive astrocytes [3]. Significant quantities of lipid may accumulate within the plaques as a result of myelin breakdown. The axons are relatively preserved within the lesions, but more recent investigation has shown axonal jury within multiple sclerosis plaques. The pathologic diagnosis may be challenging based on the initial frozen-section specimen when the primary suspicion is malignancy. Tumefactive demyelinating lesions have been misinterpreted as gliomas, with the correct diagnosis being revealed only after histologic evaluation [2, 3]. Thus, the preoperative diagnosis, or at least consideration, of a demyelinating process is imperative to avoid unnecessary resection or adjunctive therapy [2].
http://www.ajronline.org/cgi/content/full/182/1/195
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Why do you have an interest in it? I had read they were rare. I hope you haven't gotten one. It sounds like those brain biopsies are a bitch on hairstyles.
I had a loss of vision last thurs-went to Er etc-anyway long story short had MRI on Fri and got the films yesterday-reaqd them prior to today when I see my neuro at 11am.
Findings were-Basically my optic nerves look fine but-There is a prominent new tumefactive lesion within the left temporo-occipital white matter confirming interval progression of activity. All other lesions from previous MRIs remain evident and unchanged.
As usual prior to seeing him to try to look for the tru meaning of it all- I will just have to be more patient but do feel a bit nervous about todays visit.
I will let u know how I go today though - My long hair is my pride and joy so yeah they better not want to touch it!!
I think they mean though if there has no been no history of MS that some people have been biopsied when it was MS all along. Who knows-until the next installment this afternoon!!
An MRI is just a snapshot, a picture of the brain at a point in time that has to be interpreted to know what the picture means. Its not an autopsy that actually proves what is in the brain, it is a snapshot that has been interpreted.The interpretation could be right or wrong, an autopsy will eventual be the final answer.
Since you are known to have MS it is likely MS and as you say if it is MS the inflammation will subside and it will shrink pretty much confirming that it is MS without a biopsy. Relief on that front.
It just puts you into MS with large lesions or small lesions? As far as disability goes, I have read no proof that large lesions are more disabling than small lesions...but I really wonder about that?
The brain is plastic and can re route signals around damage & I would think the brain could re route around smaller lesions. I have small lesions. I was not diagnosed for 19 years & I did not suspect anything was wrong with me during those 19 years except some depression. It made it tough for me to justify starting a med when I found out I did have it...i justified my not needing a med based on small lesions. But damage is accumulative and I ended up with frequent relapses that year & I started betaseron. The relapses slowed. And I read that lesion sizes can vary between episodes within a single person. And lesion location is more of a predictor than lesion size....
So you are looking at the issue from the opposite point of view that I had. I'm glad you are going on Tysabri...I remember you were offered a trial, given the info that you have a tumefact lesion the possibility of you being in the 50% group that does not get the med would probably too great a risk for you.
You said ring around it. I believe it is called a ring enhancing lesion. I have that & I investigated that. I believe that is why I was diagnosed so quickly after 1 MRI scan.
A ring enhancing lesion is an active lesion that healed or "scarred"
Then the lesion was reactavated and the new activity doesn't affect the scar, MS destroys myelin, not the scar. So the "reactivated" lesion forms an enhancing ring around it, showing new active demylenation around the lesion (where the myelin is) & this is called a lesion that has been reactivated. The active enhancing ring around the lesion will also scar and stop enhancing then the MRI will not be able to determine any difference between the older inner part of the scar and the younger outer part of the scar...the MRI will show that the lesion has grown. Its just a snapshot in time that caught it while it was growing.
Ring enhancing lesions have a greater probability of becoming black holes and do indicate larger damage to the nerve....I read one post from an retired doc with MS, that they are thought to form black holes by the ring around the old scar cutting off the blood supply to the old scar..killing the tissue of the old scar thus becoming a black hole.
But an MRI is just a snapshot that is interpreted and theories are made about it....its rather nice when there is no answer key any theory could possibly be right.
So I'm just glad to hear you have chosen to start Tysabri in 2 weeks. And also that your hair is safe!
I am nervous but hey have the support of all of you guys on here!!
I am glad my hair is safe too!! LOL
He said on my next MRI it probably will be tiny just that it is obviously active and new so hopefully it does not give me much grief if any.
I will keep all informed of my progress
Thanks again :)
The drs had to hide that they were harming him on purpose so they gave him no painkillers. If they had givenh him painkillers they would have had to say why he was in pain i.e. they were doing nothing to help him...
When he started to writhe around in pain, they paralysed him with that stuff (haldol) they give crazy people. This stuff doesn't kill pain just stops you from moving. My friend wasn't crazy. He was just in horrendous pain. He had ICP nine times the norm. That's a pretty atrocious headache.
This happened at the Toronto Western Hospital. His dr was Richard Wennberg and some others. There was a court case.
Anyway, these drs will let you get away with one or two relapses but then they fake your condition and make you look dead so your family says yes to donation. The cutting out of your organs will actually kill you.
Tumefactive is the best way for drs to get organs. The leison is big, and the edema, so if they leave it, it progresses faster than regular ms.
You guys are in great danger. I will come back and tell more if you are interested. My friend only survived as long as he did because his mother was a fighter. For the last relapse she wasn't told my friend was in the hospital until they had had their way with him.