CCSVI skeptics

notasperfectasyou · Post by **notasperfectasyou** » Mon Jun 08, 2009 8:50 am

peekaboo wrote:Scorp - I have PPMS and Marie has SPMS

Kim is SPMS

cheerleader · Post by **cheerleader** » Mon Jun 08, 2009 8:54 am

scorpion wrote:Hey Cheer,

I am still a skeptic but fully prepared to throw a huge party for everyone at thisisms is this theory pans out!!! Chris and notasperfectasyou, I hope if I do throw th e party I will not have to keep you guys seperated. Actually my guess is that if CCSVI is the answer we have been waiting for you guys will be doing the happy dance together!! I was wondering if this treatment is being tried on people with PPMS. I think before any of us start talking about a cure we need to remind ourselves that we have many brothers and sisters out there with PPMS pr SPMS that still have very few answers.

Hey Scorpion...
We're way too early for the word "cure." However, I will say that I believe CCSVI precedes the disease process we call "MS." Dr. Zamboni tested PPMSers, and he found azygos blockage in all of them, just like what Dr. Dake found in Holly. Dr. Dake was able to place a stent in Holly, and repair her vein. We will see if this halts her MS. If so, I will join in the happy dance with everybody...even Ken and Chris

cheer

chrishasms · Post by **chrishasms** » Mon Jun 08, 2009 9:23 am

cheerleader · Post by **cheerleader** » Mon Jun 08, 2009 9:45 am

chrishasms wrote:I agree. This is looking more like Revimmune and Campath is nothing more than treating a symptom...the Auto Immune side of MS. I have actually talked to a couple of GP's and they seem pretty confident this may be the antagonist everyone has been looking for.
I believe Zamboni did some PPMS'ers did he not?

Chris....Nobody has said stents were "symptom treatment." I said I believe CCSVI starts the process we call MS. Just my belief that there is no need to treat the "autoimmune side" of MS if demyelination is caused by venous congestion...just like those DAVFs-they don't have any autoimmune action.
Dr. Zamboni found azygos blockage in all the PPMSers he tested. Holly (peekaboo) is a PPMSer and she had azygos blockage which was repaired with a stent by Dr. Dake. Time will tell...
cheer

notasperfectasyou · Post by **notasperfectasyou** » Mon Jun 08, 2009 10:51 am

curiously, the idea of stents is not new. Is double jugular blockage so odd that it's logical that no one, who happened to have MS, was found to need stents from some other reported issue.

I'm thinking this as I just cleared some New England Journal of Medicine e-mails out of my mailbox. One of the interesting things about NEJM is that they have a case study in each issue where they diagnose something that is unique. I'd think someone being found to have double jugular blockage on an unrelated issue would have come up by now many times -and- I imagine that at least one of those would have been someone with MS. How odd is it? Ken

cheerleader · Post by **cheerleader** » Mon Jun 08, 2009 11:06 am

Ken-
search "internal jugular vein thrombosis" or jugular + meniere's...lots of medical journal articles there. The problem is, once demyelinating lesions are found on MRI and MS is diagnosed, neuros don't look any further than the brain. It's been missed, because no one has looked until now. Jeff is hollering as I type..."Why hasn't anyone looked at this before!!!" I say medical specialization is to blame.
cheer

notasperfectasyou · Post by **notasperfectasyou** » Mon Jun 08, 2009 11:17 am

tough to articulate the thought.

setting aside the idea of the patient having to have MS........ Wouldn't folks having MRV's over the years rack up a fair numbers being being diagnosed with double jug blockage? I don't know what conditions normally result in folks being sent for MRV, the kind that is being used by Dr.Dake for us right now. But, I'm just imagining that over the course of his experience this must be one of a lot of MRV's he's done that showed double jug blockage. So there is a 2 part wondering. 1) If we could review all the MRV's that have been done that found double jug blockage over the years, what would we find as the frequently reported issues that resulted in the test being ordered, and 2) of all the double jug blockage repairs that have been done over the years, is it very unlikely that any of those folks might have incidentally been an MS'er.

chrishasms · Post by **chrishasms** » Mon Jun 08, 2009 12:09 pm

Sharon · Post by **Sharon** » Mon Jun 08, 2009 1:59 pm

notasperfect...

It is my understanding that MRV's are a relatively new technology, especially when looking at the deep veins. So, the blockages may have been there, but they could not be seen.

marcstck · Post by **marcstck** » Mon Jun 08, 2009 3:46 pm

As anyone who has been following these threads knows, I'm still skeptical but quite open-minded about the possibility of CCSVI playing a significant role in the MS picture. I've spoken to Dr. Dake, and have also talked to my PCP about ordering a CT venography to see what's going on with my veins (still waiting to hear back on that one).

One of the major hurdles I have in accepting CCSVI as "the" cause of all MS is the fact that many, if not most, MS patients also suffer autoimmune comorbidities. Personally, along with my "atypical PPMS" I also have Hashimoto's thyroiditis, and "atypical autoimmune psoriasis/eczema". Research literature suggests that I am more the rule than the exception. Informal surveys have indicated that a large segment of MS patients also suffer from some other autoimmune condition.

I brought this up with Dr. Dake, and he admitted he couldn't explain the comorbidities that are often seen in MS patients.

There's also the genetic link, which casts some doubt on the CCSVI theory. It's well known that children of a parent who suffers from an autoimmune condition are much more likely to develop MS later in life. To use myself once again as an example, my mother suffers from type I diabetes, which made the odds of my developing autoimmunity much more likely. Again, published research bears out this relationship.

I also have trouble accepting the notion that there is any one cause of MS, as the disease is so heterogeneous that it is most likely not a disease at all, but a syndrome.

I'd also like to see how EBV fits into the CCSVI model, as there is a growing mountain of evidence that people not infected with EBV do not get MS in any of its forms.

peekaboo · Post by **peekaboo** » Mon Jun 08, 2009 4:39 pm

from what I understand...EBV can be very debilitating and if one had it they would know...is this true? if so...not me.. just like CPn..we might be carriers but not have it?

marcstck · Post by **marcstck** » Mon Jun 08, 2009 4:44 pm

peekaboo wrote:from what I understand...EBV can be very debilitating and if one had it they would know...is this true? if so...not me.. just like CPn..we might be carriers but not have it?

The vast majority of adults carrying EBV have no idea they are infected with it. The initial effect infection can be asymptomatic, or might be mistaken for a cold or flu.

Recent research indicates that 100% of MS patients are infected with EBV and that the virus almost certainly plays some role in the MS disease process...

http://www.webmd.com/multiple-sclerosis ... RSS_PUBLIC

chrishasms · Post by **chrishasms** » Mon Jun 08, 2009 5:43 pm

mrhodes40 · Post by **mrhodes40** » Mon Jun 08, 2009 6:17 pm

Ken the MRV's have to be timed to see what you are looking at and veins are not usually looked at; it is rare to do so. The ARTERIES are the thing usually assessed, that is not the same thing at all and you don't see the veins when you do that. So this is a relatively new technolocy and this is an unusual application.

There are situations in which people have jugular stenosis and they are not thought to have MS and not being evaluated for MS. For example if you have some kind of cancer and your jugs get destroyed either through direct cancer invasion or chemo irritation you are considered to be OK because the vertebral veins and colllateral circulatory routes "can" take the load. These patients do not usually live long enough to develop MS and if they did develop neuro symptoms it is questionable whether anyone would think to check and see if they had developed MS, most likely such symptoms would be attributed to some long term effect of chemo. or other disease processes.

However the existance of such a popuation of people, incredibly small though they are, might mean that once people actually LOOK to see if a person with such an unfortunate injury did develop MS after a goodly period of time (I think it takes time MS is slow moving really) then they would be a powerful affirmation of this as causative should it be shown in even a couple of people that this did indeed happen; bilateral jug injury and occlusion+10 years time=MS. That would do it. FOrget mice.....

I can't wait for the fullness of this information to come out.

I think it could be the antagonist for a few AI issues. Why does it necessarily need to be MS?

Cheer referenced in another thread a pubmed reference that showed scleroderma which was triggered by venous insufficiency in a specific area that cleared up once the venous issue was cleared..............

that is not the brain though. The thing that makes it MS is when it is in the veins leading from the head.

Marc the thyroid gland is drained by these same veins, depending of course on the individual person's area of blockage. For example mine is too high to impact it......

and there is an inverse relationship between RA and MS. Wouldn't you know it I have both................how'd that happen?

This study demonstrates coexistence of RA, AIT, and IDDM at higher than expected rates but reduced comorbidity between RA and MS

here

marcstck · Post by **marcstck** » Mon Jun 08, 2009 6:25 pm

chrishasms wrote:I come from a family with AI issues but also some arterial / venous issues.

I also understand Marc's question. Before HiCy my immune system was so out of whack I wasn't growing leg hair and my asthma was horrid. Both issues are gone now. I can see where having CCSVI could set off the AI process. It's just the body has been wrong for so long blood flow wise, and after the body attacking itself for no reason, I see no reason to think the body would have 0 clue what it was doing over an accumulated time. I see no reason to think having CCSVI would limit you to having just MS, - I think it could be the antagonist for a few AI issues. Why does it necessarily need to be MS?

The EBV thing is interesting though...

Well, according to this CCSVI theory, the immune system wouldn't necessarily be out of whack. If a reflux of blood was causing inflammation/edema in the CNS, then the immune system would actually be behaving rather normally to react to it.

Even if CCSVI did lead to a breakdown in the blood brain barrier, and a so-called "autoimmune" response in the CNS, there's no reason to believe that that response would carry over to other body systems. My blood tests reveal anti-thyroid antibodies (the hallmark of Hashimoto's thyroiditis), which would not easily be explained by an immune response gone awry in my CNS. Likewise, the wide range of autoimmune comorbidity seen in MS patients would be hard to explain in the context of an immune response to reflux in the CNS.

On a more personal note, I've been reading your enthusiastic posts in regard to CCSVI with interest. While I admire your ability to jump into these very experimental therapies headfirst, if I were in your position I think I'd exercise much caution. Revimmune seems to be working for you, and you say that your lesions are healing. You've seen a reversal of your symptoms, and if my understanding of revimmune is correct, it will probably be quite a few years before your MS might return in any force.

If that's the case, I don't see any reason for you to rush into yet another experimental treatment, especially one which certainly has not been proven in any way, shape, or form to be of lasting benefit to patients suffering from Multiple Sclerosis.

In regards to CCSVI, what we have so far have is anecdotal evidence from a handful of patients who've undergone the stenting procedure, none of whom has experience post procedure extending beyond four or five weeks, and the research, compelling as it might be, of one group of scientists that has yet to be replicated in any large-scale studies. Despite the enthusiasm on this board for CCSVI, a broader, scientific view would be that this is an interesting but unproven hypothesis, and that the stenting procedure is a serious surgery that shouldn't be undertaken lightly.

A patient in my position, one with worsening MS that could very well leave them bedbound within 12 months, would have more reason to roll the dice on CCSVI, then one like you, who is seeing benefit from another radical procedure that was recently undergone. Time is on your side, it seems to me you have the luxury of waiting to see how this whole thing pans out.

Remember, Chris, discretion is the better part of valor...