Not 100%
Posted: Thu Jul 09, 2009 4:46 pm
I talked to Island Girl last night she did not have any answers yet and more testing today.
She did NOT have an operable stenosis.
She literally took one for the team guys. She had her MRI MRV and then dopplers. All appeared normal, but Dr D wanted to look with venogram and make sure so she agreed to do that just to make sure nothing was in there beyond the MRV.
There was an unusual thing at the site of the vena cava and subclavian but not enough to repair, and supposedly not enough to cause venous insufficiency.
Apparently, according to IG's comment, Dr D has seen one other person like this, I am not sure how many total patients with stenosis to compare to his 2 no stenosis patients.... He did think he noticed some peculiar similarities in the two non stenosed people, but I don't know exactly what that was and how he felt that played in, but he is obviously looking at that aspect according to IG. (He was slapping the table shouting I KNEW it about aspects of their history)....
IG is undergoing some other tests today to try to find out why she has such terrible neck pain. She had an MRI of the neck scheduled-no results yet.
She wanted me to tell everyone she does not regret this at all because she knows now this is not an avenue for her to be concerned about and pursue. Her MS is not caused by CCSVI apparently, even if many others might have that pathology. She did ask Dr Dake "DO I have MS then?" He said "yes". Obviously he has no way to say or offer anything else at this point, we do not have the full understanding of what the full scope of this is.
There could come a day when if you don't have stenosis you will be immediately referred for further testing for something else, but that is way in the future, Obviously right now MS is exactly what it always has been, this is a new idea being explored, not set in stone.
However, I'd say that it would be interesting if such study persons with no stenosis should be given high tesla MRI's. Where are their lesions? are they actually on the veins as is seen in MS studies or do these people have lesions in slightly different locations?
This is why.......
One of the reasons this model makes so much sense is that the MS patient has perivenular lesions, in other words lesions ONLY on veins. Autopsies of MS patients and research shows this. Furthermore the lesions tend to by symmetrical (just like the pairs of veins are) AND the lesions tend to be right in the periventricular region where the highest blood flow is. That is naturally the area that would be impacted the most by venous back up. All of these thing point to a venous involvement.
Do these people who do not have stenosis have a subtly different kind of lesion perhaps? Are they in particular having lesions in the parenchyma and or along arteries as well as veins? A high tesla MRI could determine this.
In the leg ulcer about 30-40% of ulcers according to one paper I read were directly attributable to venous stenosis, the other lesions were caused by many other kinds of issues and even apparently 10% are primarily inflammatory in nature with that last group being very hard to identify and treat. Zamboni's numbers sure don't seem to be pointing to that outcome with his very high reflux numbers and concordance, but we will know more about that as time goes on and more is released.
MS is a diagnosis of last resort, so it may be that people who are not typical---lyme perhaps? gluten ataxia?--- end up with that MS diagnosis and our current technology just does not differentiate but it may with more study and effort to tease out these differences.
This research is a great step in the right direction, to finally fully investigate the involvement of the venous system in MS lesions.
I do not pretend to know where this will go, what I do know is that I personally have two severe stenoses with a lot of collateral circulation that disappeared as soon as the stenoses were relieved. That was MY reality.
IG had no stenosis. That is HER reality. Both are obviously real today but I am very sad for IG. I wanted to share this with her.
The million dollar question is: do we have the same disease? I suggest probably not.
She did NOT have an operable stenosis.
She literally took one for the team guys. She had her MRI MRV and then dopplers. All appeared normal, but Dr D wanted to look with venogram and make sure so she agreed to do that just to make sure nothing was in there beyond the MRV.
There was an unusual thing at the site of the vena cava and subclavian but not enough to repair, and supposedly not enough to cause venous insufficiency.
Apparently, according to IG's comment, Dr D has seen one other person like this, I am not sure how many total patients with stenosis to compare to his 2 no stenosis patients.... He did think he noticed some peculiar similarities in the two non stenosed people, but I don't know exactly what that was and how he felt that played in, but he is obviously looking at that aspect according to IG. (He was slapping the table shouting I KNEW it about aspects of their history)....
IG is undergoing some other tests today to try to find out why she has such terrible neck pain. She had an MRI of the neck scheduled-no results yet.
She wanted me to tell everyone she does not regret this at all because she knows now this is not an avenue for her to be concerned about and pursue. Her MS is not caused by CCSVI apparently, even if many others might have that pathology. She did ask Dr Dake "DO I have MS then?" He said "yes". Obviously he has no way to say or offer anything else at this point, we do not have the full understanding of what the full scope of this is.
There could come a day when if you don't have stenosis you will be immediately referred for further testing for something else, but that is way in the future, Obviously right now MS is exactly what it always has been, this is a new idea being explored, not set in stone.
However, I'd say that it would be interesting if such study persons with no stenosis should be given high tesla MRI's. Where are their lesions? are they actually on the veins as is seen in MS studies or do these people have lesions in slightly different locations?
This is why.......
One of the reasons this model makes so much sense is that the MS patient has perivenular lesions, in other words lesions ONLY on veins. Autopsies of MS patients and research shows this. Furthermore the lesions tend to by symmetrical (just like the pairs of veins are) AND the lesions tend to be right in the periventricular region where the highest blood flow is. That is naturally the area that would be impacted the most by venous back up. All of these thing point to a venous involvement.
Do these people who do not have stenosis have a subtly different kind of lesion perhaps? Are they in particular having lesions in the parenchyma and or along arteries as well as veins? A high tesla MRI could determine this.
In the leg ulcer about 30-40% of ulcers according to one paper I read were directly attributable to venous stenosis, the other lesions were caused by many other kinds of issues and even apparently 10% are primarily inflammatory in nature with that last group being very hard to identify and treat. Zamboni's numbers sure don't seem to be pointing to that outcome with his very high reflux numbers and concordance, but we will know more about that as time goes on and more is released.
MS is a diagnosis of last resort, so it may be that people who are not typical---lyme perhaps? gluten ataxia?--- end up with that MS diagnosis and our current technology just does not differentiate but it may with more study and effort to tease out these differences.
This research is a great step in the right direction, to finally fully investigate the involvement of the venous system in MS lesions.
I do not pretend to know where this will go, what I do know is that I personally have two severe stenoses with a lot of collateral circulation that disappeared as soon as the stenoses were relieved. That was MY reality.
IG had no stenosis. That is HER reality. Both are obviously real today but I am very sad for IG. I wanted to share this with her.
The million dollar question is: do we have the same disease? I suggest probably not.