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thornyrose76 wrote:An example: Denise Manley, Secondary Progressive-there is no waxing/waning of symptoms, you are in a "progressive" state. She had the procedure and she is just fine. Anyone who is anyone and has been following the CCSVI "theory" knows who Denise Manley is. You might want to do a little more research before you do anymore posting.
NMSS wrote:SPMS begins with an initial relapsing-remitting disease course, followed by progression of disability (3a) that may include occasional relapses and minor remissions and plateaus (3b). Typically, secondary-progressive disease is characterized by: less recovery following attacks, persistently worsening functioning during and between attacks, and/or fewer and fewer attacks (or none at all) accompanied by progressive disability. According to some natural history studies, of the 85% who start with relapsing-remitting disease, more than 50% will develop SPMS within 10 years; 90% within 25 years. More recent natural history studies (perhaps because of the use of MRI to assist in the diagnosis) suggest a more benign outlook that these numbers suggest. Nevertheless, many patients with RRMS do develop SPMS ultimately.
I was one of the first treated at Hubbard and had the fMRI both before and after the angio. While in the MRI, an image of a clock flashed in front of me and a voice stated a certain time. I had to push a button if I thought the voice stated the wrong time. I felt my mind was sharper in the second fMRI (post angio).
Just wanted to give me own view on the study. I think the use of fMRI holds much promise for identifying cognitive dysfunction in PwMS. But, in my opinion, the study contained some flaws. For example, my first fMRI was taken two weeks before my angioplasty. Then my follow up fMRI was the morning after angio. Thus, a number of changes could have occurred in those two weeks between fMRIs. My first fMRI was late afternoon, the second one very early in the morning. I stopped all supplements a few days before the angio to avoid any complications with blood thinning medications.
Interesting to note, though, that all the MS patients had an improvement. It would be improbable that all would have such an improvement by placebo alone. Equally interesting is that all these flaws resulted in all MS patients experiencing only improvement. This is where Questor brings up a good point about testing the healthy controls too.
I look forward to more fMRI studies being done in the future. Though the more I think about the most effective way of proving/disproving the CCSVI theory, the more I think measuring CBF/CBV before and after angio would be most effective. Such a study would be less vulnerable to placebo and other flaws seen in this publication.
Nevertheless, every study adds another piece to the puzzle. I'm thankful to the Hubbards for their devotion, passion, and thoughtfulness. Hopefully more researchers with diverse backgrounds and specialties become interested in MS with all this new research popping up.
thornyrose76 wrote:An example: Denise Manley, Secondary Progressive-there is no waxing/waning of symptoms, you are in a "progressive" state. She had the procedure and she is just fine. Anyone who is anyone and has been following the CCSVI "theory" knows who Denise Manley is. You might want to do a little more research before you do anymore posting.
NMSS wrote:SPMS begins with an initial relapsing-remitting disease course, followed by progression of disability (3a) that may include occasional relapses and minor remissions and plateaus (3b). Typically, secondary-progressive disease is characterized by: less recovery following attacks, persistently worsening functioning during and between attacks, and/or fewer and fewer attacks (or none at all) accompanied by progressive disability. According to some natural history studies, of the 85% who start with relapsing-remitting disease, more than 50% will develop SPMS within 10 years; 90% within 25 years. More recent natural history studies (perhaps because of the use of MRI to assist in the diagnosis) suggest a more benign outlook that these numbers suggest. Nevertheless, many patients with RRMS do develop SPMS ultimately.
I have SPMS -Im 34, was told in 2005 that I'm in a progressive state/SPMS. Have been in a wheelchair since 2002, I cannot stand or wallk but still have sensation, not completely paralyzed. Been in a wheelchair since breaking my ankle in 2002.. Prior RR. Had dropped lef t foot and heaviness in my thighs which I developed over night. If I get the tiniest benefit from the a ngioplast it'll be worth it. I don't need your diagram but if it makes you feel really, really smart then glad I could make you feel better about yourself.
scorpion wrote:I wish there was a way we could erase all preconceptions and inital expectations of the "liberation procedure" so we can better get a handle on what has occurred since Zamboni released his "groundbreaking" study over a year and a half ago. It does seem the miracle recoveries have slowed down which maybe means that we are getting closer to the truth about whether the liberation procedure has any effect on the progression of MS or not. What concerns me are two assumptions that I see continually occurring over and over as people try to accurately report what effect angioplasty has had on their MS.
1)ANY "improvement" they experience is immediately credited to the angioplasty procedure. MS is called relapsing remitting because symptoms wax and wane so a symptom that recedes six months after angioplasty MAY be the result of the natural course of someone's disease.
2)Any studies not reinforcing the validity of CCSVI are flawed. There must come a time that people start recognizing the issue of venous blockage in MS (if it occurs at all) is not as clear cut as Zamboni and some others would like us to believe. It is time people allow science to dictate the direction of CCSVI and not emotionally charged postings on internet websites.
The longer we allow the "myths" surrounding CCSVI to linger the longer it will take for us to get clear cut answers as to the validity of CCSVI.
An example: Denise Manley, Secondary Progressive-there is no waxing/waning of symptoms, you are in a "progressive" state. She had the procedure and she is just fine. Anyone who is anyone and has been following the CCSVI "theory" knows who Denise Manley is. You might want to do a little more research before you do anymore posting.
She is not "just fine". She states she is feeling better but still has symptoms of MS.
thornyrose76 wrote: I have SPMS -Im 34, was told in 2005 that I'm in a progressive state/SPMS. Have been in a wheelchair since 2002, I cannot stand or wallk but still have sensation, not completely paralyzed. Been in a wheelchair since breaking my ankle in 2002.. Prior RR. Had dropped lef t foot and heaviness in my thighs which I developed over night. If I get the tiniest benefit from the a ngioplast it'll be worth it. I don't need your diagram but if it makes you feel really, really smart then glad I could make you feel better about yourself.
I don't know if it makes me feel smart but I'm sorry about what you've been through and I can understand your conviction that any benefit would be worth any effort.
Still, MS course doesn't make positive results more likely or negate the need for facts.
The MS categories mystify me. I had my first symptom in 2006... double vision. I was diagnosed as RRMS. Since then I have had a variety of symptoms that include severe pain and fatigue. But no "relapses". I think this MS "syndrome" (no cause as yet known) can have many more facets than the NMSS states. Oh, BTW, I was 60 when diagnosed. Hey, that can't be !!! MS is a young person's disease !!! What is known about MS is not much in my opinion.
MarkW wrote:If you are seeking balanced information on balloon venoplasty go to www.ccsvi.org and read the info many times over. Listening to the naysayers is dangerous as they appear to raise doubts by asking questions but are naysayers.
Scientists know that nothing is ever proven. Balloon venoplasty for stenosed veins is a personal choice based on your MS and ability to pay. Read my story if you wish.
MarkW
Same old same old. If you do not buy into CCSVI 100% you are a naysayer because there is no in between when it comes to CCSVI and MS. I still feel that this type of thinking has pushed people who may be interested in learning more or even contributing to CCSVI research away but hey whatever you feel you need to do and say. Cheer I have seen all kinds of papers on CCSVI and my intent in this post was not to discuss them but to merely state some observations I think are important. As for getting a grip(love the play on words by the way Jugular) I feel what I am holding onto suits me just fine thanks! .For the sake of this post not turning into an angry tirade against the "naysayer" this will be my last post on this thread.
See 3 posts above ...
Another lie ...
Again, what is your agenda in this CCSVI forum? Didn't you say (in a post I linked before) you were going to be more open minded and let the doctors figure this out before commenting further?
There sure were a lot of VERY smart doctors at INSVD ... what are your thoughts in the information presented there?
And regarding anyone (Denise Manley or otherwise) post-angioplasty ... nobody ever said it's a CURE or ALL "MS" symptoms go away ... some damage is permanent. The GOAL is to stop progression and HOPE some symptoms abate ...
You seem to forget that quite often, even though many people have had this conversation with you at least 100 times in the past year+ since I came to TIMS.
thornyrose76 wrote: I have SPMS -Im 34, was told in 2005 that I'm in a progressive state/SPMS. Have been in a wheelchair since 2002, I cannot stand or wallk but still have sensation, not completely paralyzed. Been in a wheelchair since breaking my ankle in 2002.. Prior RR. Had dropped lef t foot and heaviness in my thighs which I developed over night. If I get the tiniest benefit from the a ngioplast it'll be worth it. I don't need your diagram but if it makes you feel really, really smart then glad I could make you feel better about yourself.
I don't know if it makes me feel smart but I'm sorry about what you've been through and I can understand your conviction that any benefit would be worth any effort.
Still, MS course doesn't make positive results more likely or negate the need for facts.
Noo one disputes that but there are far too many person(s) ready to pan the ccsvi theory and those that have improvements post procedure. Frankly that is very telling but it's easy to do so when posting on a message board.
ccsvihusband - thank you ! your last post is much appreciated =]
i had another account here that i used often, but it seems to have disappeared. couldn't log in. however, your post is something that's needed to be said here for a long while. . . . .
Plus, the whole collagen shift of MS (Collagen I in healthy p's to Collagen III in pwMS/CCSVI) is interesting.
There is still A LOT of research to be conducted. But in the mean time, i don't think its reasonable for miserables to make this forum miserable. We all want our life back, and we all need to hear the truth.. but at this point in time.. NOBODY KNOWS THE TRUTH! so let this be.
Jugular wrote: Do you have any liberation studies contrary?
You're asking if I have scientific papers showing that an unproven theory is an unproven theory?
Lyon. I assume from your post that you are not familiar with the scientific method.
In science nothing is proven. Theories are hypothesized and most of them are proven wrong. The surviving theories is considered the "truth by now".
At this moment the only-autoimmune theory is quite discredited. Any medicament trial that has worked in EAE but not in MS is a proof against it. On the other hand no paper that discredits CCSVI has been presented by now (except some few from doctors saying that they cannot find it in their patients)
frodo wrote:Lyon. I assume from your post that you are not familiar with the scientific method.
In science nothing is proven. Theories are hypothesized and most of them are proven wrong. The surviving theories is considered the "truth by now".
At this moment the only-autoimmune theory is quite discredited. Any medicament trial that has worked in EAE but not in MS is a proof against it. On the other hand no paper that discredits CCSVI has been presented by now (except some few from doctors saying that they cannot find it in their patients)
That works for me. So if any of us have science questions we should go to you for a ruling......
