Good point...it could even be a legitimate blindness to the risks we are accustomed to, compared to the novel but small risk of the minimally invasive percutaneous venoplasty procedure. Kinda like worrying more about a plane crash, when car crashes are far more likely, but we've long since accepted car crashes as an acceptable risk.bluesky63 wrote:It would be fascinating to see a direct comparison using the same standards -- for instance, warning people using infusion therapies or steroids about every detail of every danger of those, including the danger of infection if they need a portacath, which many people do when they get a monthly infusion.
The alleged research commitment by NMMSS
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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mshusband
- Family Elder
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- Location: Pittsburgh, PA, USA
- Contact:
WHY do we keep having the same argument? Let's clear it up once and for all.
IF CCSVI IS the problem (as many assume it to be).
THEN
MS IS NOT a disease.
MS (meaning multiple sclerosis) IS SCARS left in the CNS of a person.
MS IS an immune response to dead blood cells/deoxygenated blood cells/iron from blood being in a place in the CNS it should not be.
Therefore YES, MS IS a CORRECT immune response to attacking something that shouldn't be there. But WHY is it there? (hint - CCSVI)
HOWEVER,
CCSVI IS a vascular disease (or condition).
CCSVI IS what causes dead blood cells/deoxygenated blood/iron from blood being in the CNS where it should not be.
Those things from CCSVI ARE what would cause the immune response.
Like I said, I'm not a doctor, I'm an engineer ... but from an engineering perspective (and assuming the body is a mechanism similar to a machine) ... that all makes 100% absolute sense to me.
IF CCSVI IS the problem (as many assume it to be).
THEN
MS IS NOT a disease.
MS (meaning multiple sclerosis) IS SCARS left in the CNS of a person.
MS IS an immune response to dead blood cells/deoxygenated blood cells/iron from blood being in a place in the CNS it should not be.
Therefore YES, MS IS a CORRECT immune response to attacking something that shouldn't be there. But WHY is it there? (hint - CCSVI)
HOWEVER,
CCSVI IS a vascular disease (or condition).
CCSVI IS what causes dead blood cells/deoxygenated blood/iron from blood being in the CNS where it should not be.
Those things from CCSVI ARE what would cause the immune response.
Like I said, I'm not a doctor, I'm an engineer ... but from an engineering perspective (and assuming the body is a mechanism similar to a machine) ... that all makes 100% absolute sense to me.
Last edited by mshusband on Mon May 03, 2010 7:56 am, edited 1 time in total.
I hate to say this, but you kinda, sorta sound like Bill Clinton when he said, "It depends on what the definition of 'is' is."patientx wrote:No, I do not agree those words are anything approaching a lie. Bordering on misleading, yes. But, then again, it might depend on the definition of autoimmune.
Lie: noun http://dictionary.reference.com/browse/lie
1. a false statement made with deliberate intent to deceive; an intentional untruth; a falsehood.
2. something intended or serving to convey a false impression
3. an inaccurate or false statement.
.
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cheerleader
- Family Elder
- Posts: 5361
- Joined: Mon Sep 10, 2007 2:00 pm
- Location: southern California
Yo, patient x
I'm calling you out.
how come I post something and you're on me like a cheap suit
Sadly, I have no anonymity anymore...but you get to hide behind the paper bag hat and throw stuff at every post I write.
One thing I can tell you, beyond a reasonable doubt, it what Dr. Dake said. You do not know that. The article is wrong. Dr. Dake looks at CCSVI as a venous disorder, with a strong CORRELATION to MS. He told us, point blank, he was treating Jeff's jugular vein malformation, and had NO IDEA how it would affect his MS. Jeff has his one year check up on May 12. We may have a better idea how his treatment has changed his brain after that. We'll keep you posted.
So far, after one year- Jeff has no more sleep apnea, no more spasms, no more heat intolerance, less fatigue, no more cog fog, much better balance (he can downhill ski again), much better bladder. He dreams, wakes up refreshed, ready to work. He went on a 15 mile mountain bike ride this weekend. Some other people with venous malformations might want some o'that.
so back off, paper hat (wo)man---I was pointing out factual errors, not opinion.
cheer
I'm calling you out.
how come I post something and you're on me like a cheap suit
Sadly, I have no anonymity anymore...but you get to hide behind the paper bag hat and throw stuff at every post I write.
One thing I can tell you, beyond a reasonable doubt, it what Dr. Dake said. You do not know that. The article is wrong. Dr. Dake looks at CCSVI as a venous disorder, with a strong CORRELATION to MS. He told us, point blank, he was treating Jeff's jugular vein malformation, and had NO IDEA how it would affect his MS. Jeff has his one year check up on May 12. We may have a better idea how his treatment has changed his brain after that. We'll keep you posted.
So far, after one year- Jeff has no more sleep apnea, no more spasms, no more heat intolerance, less fatigue, no more cog fog, much better balance (he can downhill ski again), much better bladder. He dreams, wakes up refreshed, ready to work. He went on a 15 mile mountain bike ride this weekend. Some other people with venous malformations might want some o'that.
so back off, paper hat (wo)man---I was pointing out factual errors, not opinion.
cheer
Last edited by cheerleader on Mon May 03, 2010 7:55 am, edited 1 time in total.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
Problem here is that by definition autoimmune is when the body attacks itself in error/for no reason. In the scenario you laid out, there is a reason for the body to attack those damaged/dying/iron-laden neurons and so it is simply an immune response, not an autoimmune response.mshusband wrote:Therefore YES, MS IS an autoimmune response.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
Not to belabor the issue, but . . .
Shouldn't that statement be: "MS IS an immune response..."?
Please, correct me if I'm wrong
Thanks.
.
Okay, maybe I'm wrong... maybe I learned it wrong... maybe I'm remembering it wrong, but...mshusband wrote:MS IS an auto immune response to dead blood cells/deoxygenated blood cells/iron from blood being in a place in the CNS it should not be.
Shouldn't that statement be: "MS IS an immune response..."?
Please, correct me if I'm wrong
Thanks.
.
I don't think Dr. Miller is trying to shut down CCSVI research.
I can't say I got any warm fuzzy feeling about him as my doctor, but I did believe that he will keep an open mind about MS and its causes and treatments. I think it takes a lot for a doctor to admit to a patient that he doesn't know everything. And he didn't know me prior to December.
As Eric said, MS is autoimmune. We can't deny that component, but I doubt its root cause is autoimmunity. I believe it is secondary.
If Dr. Miller partnered w/Dr. Sclafani, it would have been on pre and post liberation care and assessment. I wish they would have partnered. It is very important for influential neurologists to see the results of the treatment and note the changes. Unfortunately, the study didn't happen because the NMSS funding for CCSVI research is so small, it was not worth the time to apply for a $100,000 grant when the study would cost $8,000,000-$10,000,000. It always comes back to money.
I can't say I got any warm fuzzy feeling about him as my doctor, but I did believe that he will keep an open mind about MS and its causes and treatments. I think it takes a lot for a doctor to admit to a patient that he doesn't know everything. And he didn't know me prior to December.
As Eric said, MS is autoimmune. We can't deny that component, but I doubt its root cause is autoimmunity. I believe it is secondary.
If Dr. Miller partnered w/Dr. Sclafani, it would have been on pre and post liberation care and assessment. I wish they would have partnered. It is very important for influential neurologists to see the results of the treatment and note the changes. Unfortunately, the study didn't happen because the NMSS funding for CCSVI research is so small, it was not worth the time to apply for a $100,000 grant when the study would cost $8,000,000-$10,000,000. It always comes back to money.
yes, and I'm not trying to play semantics, I think it really is the crux of the matter...all the evidence that says m.s. is autoimmune is, under cccsvi theory, merely evidence of immune involvement, not autoimmune. We are not bucking decades of evidence of immune involvement, the theory encompasses that but has an explanation for it, which sure beats the original of, "who knows?"
ccsvi theory also explains why an antigen for m.s. was never found, when autoimmune diseases always have an antigen...
ccsvi theory also explains why an antigen for m.s. was never found, when autoimmune diseases always have an antigen...
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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fogdweller
- Family Elder
- Posts: 412
- Joined: Tue Dec 08, 2009 3:00 pm
An autoimmune disease is one where the body's immune system attacks and damages otherwise healthy tissue. For example, Lupus is believed to be the body's own immune system attacking and damaging other wise healthy connective tissue.
MS is believed by some to be the body's immune system attacking and demeylinating the body's brain and spinal tissue, leaving scars (scleroses).
If the immune system is merey cleaninag up cellular debris, which is a normal immune system function, and the debris is a result of damage from some other mechanism (CCSVI?? still speculation at this point but rational) then the disease is not autoimmune and supressing the immune response will not prevent demeylinating damage. (Perhapse the reason so far no immune suppressing drug has shown any slowing or reduction of progression, merely reduction of the acute episodes called relapses. Also speculation.)
Even if the immune system is just cleaning up cellular debris, there is still an abnormality at work in MS since there are immune cells in the brain/spinal cord area where they should not be because of damage to the BBB by some mechanism (also CCSVI? also speculation)
There are a couple really good pieces of evidence coming out of pathology/autopsy work in Australia that suggest that the immune activity is clean-up, not attack. Sorry I don't have time right now to look up the cites.
MS is believed by some to be the body's immune system attacking and demeylinating the body's brain and spinal tissue, leaving scars (scleroses).
If the immune system is merey cleaninag up cellular debris, which is a normal immune system function, and the debris is a result of damage from some other mechanism (CCSVI?? still speculation at this point but rational) then the disease is not autoimmune and supressing the immune response will not prevent demeylinating damage. (Perhapse the reason so far no immune suppressing drug has shown any slowing or reduction of progression, merely reduction of the acute episodes called relapses. Also speculation.)
Even if the immune system is just cleaning up cellular debris, there is still an abnormality at work in MS since there are immune cells in the brain/spinal cord area where they should not be because of damage to the BBB by some mechanism (also CCSVI? also speculation)
There are a couple really good pieces of evidence coming out of pathology/autopsy work in Australia that suggest that the immune activity is clean-up, not attack. Sorry I don't have time right now to look up the cites.
HP, you're welcome...
bestadmom, interesting...does the study that Dr. Sclafani proposed and has in IRB process not require that sort of funding? What was laid out for me in what would have been my liberation trip this very week (sniffles!) was a visit with their neurologist the day before the venoplasty procedure, but no visit immediately afterwards...although there would be a six month follow-up, so probably a neurologist assessment then as well.
bestadmom, interesting...does the study that Dr. Sclafani proposed and has in IRB process not require that sort of funding? What was laid out for me in what would have been my liberation trip this very week (sniffles!) was a visit with their neurologist the day before the venoplasty procedure, but no visit immediately afterwards...although there would be a six month follow-up, so probably a neurologist assessment then as well.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
bestadmom,
Thanks for sharing more of your thoughts.
It's always interesting learning what others are doing, thinking, wondering, questioning, and believing.
I will remain confused as to why Dr. Miller opened his remarks with the words, "MS is an autoimmune disease," which caused much consternation on many MS forums, not just here at TIMS-CCSVI.
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Thanks for sharing more of your thoughts.
It's always interesting learning what others are doing, thinking, wondering, questioning, and believing.
I will remain confused as to why Dr. Miller opened his remarks with the words, "MS is an autoimmune disease," which caused much consternation on many MS forums, not just here at TIMS-CCSVI.
.