This Is MS Multiple Sclerosis Knowledge & Support Community

Boor Bear you are so right. We definetly need to work on getting the proof & getting Doctors onboard so we can all have an opportunity to feel better. I am so happy you have positive results. Well deserved.

sbr487 I had a fourth grade teacher who always expressed to us the importance of making connections. While reading an article on the web entitled the "the warning signs of quackery" I noticed some similarities between CCSVI and the information in the article so I posted it. Please believe me I was not trying to guide anyone but I was presenting what I thought was a diferent perspective on CCSVI. Honestly what continues to make me such a huge skeptic of CCSVI is Zamboni himself. I was recently reading a CCSVI patients blog and he stated The examining physician, a colleague of Dr. Scalfani’s who was trained just a few weeks ago at Dr. Zamboni’s clinic in Italy, still considers the test somewhat subjective(meaning Zamboni's ultrasound protocol." Is this important for people to know or will it be perceived by others as an attack on Zamboni? I never have a clue what to expect. Anyway I hope everyone has a nice day and I appreciate you guys making me aware of how my posts sometimes make you feel but I swear they were never intended to hurt anyones feelings or suggest the people who come here can not make up their own minds on what is the best course of treatment options for themselves.

Scorpion, I am too not a person who would jump to anything if I am not comfortable. In my 17 years of MS, I have not tried any of the DMD's. During desperate times, I was tempted but my natural tendency has generally prevailed (I don't normally disclose that I don't take DMD's because people tend to look down upon MSers who don't follow a tested path).

I have myself felt that Dr. Z has faltered or has been off the mark in some areas (I don't have the luxury of directly interacting with these people, so this is all based on what I have read or from the news clips).
For example, Dr. Z should have better explained why he found 100% specificity (very rarely the case). I also feel that some of his stance is more political in nature than good science.

Irrespective of that, as DR's around the world have joined the effort and reported their findings (mostly informally), the credibility has increased.
But my initial interest was mainly not because what Dr. Z said but mainly due to the fact that venous connection was always hypothesized all along.
And to top that, the auto immune kind of reaches dead end when trying to explain lot of things associated with MS.

For example, BBB breach. I can understand that immune system can malfunction but why should BBB lower its filtering.

For example, if its auto immune, why is that immune activity is present (relapse) only once in a while and not always.

For example, if its auto immune, by this time we should have a clue about the gene that is causing this to happen. I think this has been researched by many groups and have found nothing to suggest.

Things like these are better explained if CCSVI is treated as the part of the MS puzzle.

If you are an individual that really, really does not believe in the CCSVI theory or the Liberation Treatment procedure, why bother with this board?

All message boards have drug company minions, and this one is probably the most popular so they're here for sure .

1eye wrote:

concerned wrote: I would simply like those concerns addressed and assessed in a scientific matter, and a consensus built in the relevant fields, and then I can assure you I'll be back to where most of you are and where my mother is. And if anyone voices a problem with that, I don't mind responding in kind.

I mind. I don't really like voicing problems, or picking fights.

Don't want to put words in your mouth, but I think you meant to say "scientific manner".
.

It was late and I had a rough day.

I do agree with some of the comments on how the outreach can be better from Zamboni, without taking any credit due to the man (which I feel he does deserve). It is very rare to have anything absolute- but in fairness, we need studies that replicate his protocol to see if those studies find the same results.

Anamolies, though, exist on the other side of the argument as well. I read the history and progression of MSers with far, far fewer lesions than what I have currently. I don't get why someone with 8 lesions is in a wheelchair while I functioned rather well, in comparison, with 36 lesions.

For those that do not know, that is not a number I throw around to exaggerate a number of lesions. Nope. As of my last MRI, I have 36 lesions scattered all over my brain. Wow, that's a lotta spots!

Now, no one has yet been able to articulate to me (in the medical community) why I have this many lesions, nor why I have this low of a EDSS score with this many lesions, nor why I get lesions without relapses. But all of those things are true for me. So why, then, did I progress this much with DMDs, chemo, anti-inflammatory antibiotics AND multiple, multiple rounds of IV steroids?

No one can give me that answer, either.

I don't know why we expect Zamboni, Simka, Siskin or anyone else to hold all the answers on CCSVI when the community that has been treating us for decades can't yet provide all the answers on the disease right now.

Algis wrote:Peace Buddies... I do not know for sure if CCSVI kills or not; what I know is that I'm almost quadriplegic and I will take any chance with reasonable risk.

We shouldn't be wasting our time picking here there or arguing ;)

Yes, please... I am a very slow and backspace-ridden typewriter. Peace would be good.

My countdown is nearly up. See some of you on the other side.

erinc14 wrote:All message boards have drug company minions, and this one is probably the most popular so they're here for sure .

I wonder if there are any "Tales from a former drug company message board minion" out there. (Seriously. Although I know that sounds a little silly.)

Cece wrote:

erinc14 wrote:All message boards have drug company minions, and this one is probably the most popular so they're here for sure .

I wonder if there are any "Tales from a former drug company message board minion" out there. (Seriously. Although I know that sounds a little silly.)

iABC news did a story about how Alqueda prowls popular political message boards , including one i went to.. i'm sure they're not the only ones doing it .

Concerned -
Type II diabetics cannot simply lose weight because they wish to. They are working with a dysfunctional pancreas, even if they helped to make that so.
It's still broken.
Elyse

Well tell that to Drew Carey!!!

And I think the main thing is to try and prevent it from happening in the first place by teaching kids to eat healthy.


EDIT: Maybe food rehab centers will be the next big thing!!!

Results of CCSVI study available

An important study on CCSVI is underway and early results are available


There have probably been over 100 Canada MS Patients treated for CCSVI by now. Each will have reported back or will soon be reporting back to their attending neurologist.


Neurologists keep good records of symptom progression.


The study taking place is the compilation of those ongoing assessments.


The data is there and the database is growing.


With MS, it has been impossible to predict the future but the past is known and one of the big questions with CCSVI treatment is does it improve conditions over what was there in the past. Does it improve conditions over what is known to occur with a placebo effect?


Those questions can be answered tomorrow.


Put a call out to the relevant neurologists and their patients. Tally the data.


Is the Government doing this work? Is the MS Society? Is the association of Neurologists? Is anyone?


I would like to know what has been going on.


CharlieC

C2010, yes, this data needs to be compiled in a registry. Back in June apparently Dr. Zamboni talked about setting one up. In July Dr. Sclafani inquired if he had done so or if Dr. Sclafani himself should do so, since the docs at the symposium wanted to be compiling the data. I am not sure, now in August, what action is being taken. But I think this is needed: set up a registry, gather data, and then there can be registry studies.

Agree with all you have written, Cece. No data should be lost.

CharlieC