This Is MS Multiple Sclerosis Knowledge & Support Community

marcstck wrote:BTW, are you aware that an ellipsis is comprised of only three periods? You've invented your own grammatical device…

Technically, if an ellipsis is at the end of a sentence, there should be a period and then an ellipsis, making four dots....

magoo wrote:I mean no disrespect, but it seems like you are insinuating that Dr. McGuckin is being deceitful and that is where the problem lies. There could be many reasons for his results. The fact is we just don't know how CCSVI is related to other diseases and how often normals may have this condition. So, I don't find his results so suspicious. Anyone with symptoms of CCSVI/MS can go to him for treatment. He treats because of a certain set of symptoms and those people have been given the diagnosis of MS. Yes, maybe it's not MS after all, but maybe there is no MS and CCSVI is the real culprit?
Personally, as a patient of MCGuckin who had a positive experience, I feel the need to give him the benefit of the doubt. He is one of the good guys and has helped push the research forward for all of us. I'm going to see him again in two weeks for my third procedure and feel very good about it.

I'm not insinuating that Dr. McGuckin is being deceitful of all, nor am I making that insinuation about any of the treating interventional radiologists. I don't think I've implied this in anything that I've written, and if I have, my apologies. I've corresponded with and/or talked to a lot of these IRs directly and hold most of them in the utmost regard. I'm simply saying that the nearly universal finding of venous abnormalities amongst the tens of thousands of patients treated throws up some red flags.

If we assume that 20,000 patients have been treated, and accept the minimum percentage of MS misdiagnosis usually quoted by those who have studied such things (5%), then a minimum of 1000 patients who don't have MS have undergone venoplasty, and the vast majority of those have been found to have venous abnormalities worthy of intervention. We know that many, but not all, of the differential diagnoses for MS have known etiologies that have nothing at all to do with the venous system. Therefore, we should have reports of at least several hundred patients who have undergone venoplasty and been found to have normal veins. Unless, of course, venous abnormalities are common in the general population, which could very well turn out to be the case.

Basically, I'm just pointing out a disconnect between the outcomes that should be expected given the current state of our knowledge, and what is actually being reported.

My suspicion is that some of the venous abnormalities being picked up during CCSVI venoplasty may be common even in healthy subjects, as has been hinted at by the cadaver studies done by the Cleveland Clinic, as well as the ongoing studies being done at BNAC. If this is the case, patients undergoing CCSVI venoplasty may be being overtreated, and this may be reflected in the relatively high number of folks reporting minimal or no benefit post procedure.

BTW, happy that you are amongst those who have experienced great benefit, and fervently hope that you continue to do so.

Rosegirl wrote:Perhaps you are both talking about different aspects of the same issue. We cannot be sure that all people treated by Dr. McGuckin have MS. Personally, after more than 20 years of living with a diagnosis of MS, my neurologist looked at images from my venogram and, when pushed, decided that I had a vascular problem, never MS. If our neurologists aren't sure what we have, the IRs at are an even greater disadvantage.

We are all looking for clarity. How can we standardize a diagnosis (MS, CCSVI, Lyme, etc.)? Is there a correlation between the location of blockages and/or lesions and symptoms? What is the best way to find abnormalities (is IVUS really necessary)? Where should the doctor look (IJVs and azygos only or elsewhere and valves only or entire veins)? What is the best method of treating what problems are found?

So far, our doctors have taken different approaches to all of the above and their success rate is not as high as we would like. But the process is evolving. Some of us will get treated as soon as possible, and hopefully our data will be captured for long term study. Some will wait until there is more consensus.

But it is critical that those who choose to get treated now realize that our doctors are doing their best with limited information. The cost of treatment and followup -- in terms of both dollars and hope -- should not be underestimated. Those who can afford to wait are probably wise to do so.

As someone who has been treated twice and has gotten no meaningful relief -- and is still willing to try again -- I can sympathize with with others who agonize over how long to wait.

Very good points. Believe me, I empathize with your mutable diagnosis, as mine is being juggled like a Lothario's lovers as well.

Cece wrote:

marcstck wrote:BTW, are you aware that an ellipsis is comprised of only three periods? You've invented your own grammatical device…

Technically, if an ellipsis is at the end of a sentence, there should be a period and then an ellipsis, making four dots....

Actually, I believe it's a bit more complicated than that. If you're using an ellipsis to signal that you're leaving off the sentence in mid thought, or the thought being conveyed is still being formulated, then a 3 dot ellipses is appropriate.

If you're using ellipses to indicate the omission of part of a quote after a period, then the ellipses should be placed with a space between it and the period. Like this. …

I'm not sure if there's a case where using four dots in a row would be applicable. Certainly, five, six, and even seven dots are a Mr. Success innovation alone.

If I'm wrong, please let me know. I'd hate to be guilty of ellipses abuse…………

They use six dotted ellipses in China.

I didn't read any of this as aspersions on Dr. McGuckin. Clinicially the IRs are finding very high rates of CCSVI in pwMS. Dr. Sclafani has, to my knowledge, only found one person with an MS diagnosis who had CCSVI-free veins (and a handful of patients with other neurological diseases who did not turn out to have CCSVI).

So the question is why CCSVI rates are so high when not every patient with an MS diagnosis has MS. It could be that the symptoms that led a neurologist to misdiagnose a patient with MS are the CCSVI symptoms.

Cece wrote:They use six dotted ellipses in China.

I didn't read any of this as aspersions on Dr. McGuckin. Clinicially the IRs are finding very high rates of CCSVI in pwMS. Dr. Sclafani has, to my knowledge, only found one person with an MS diagnosis who had CCSVI-free veins (and a handful of patients with other neurological diseases who did not turn out to have CCSVI).

So the question is why CCSVI rates are so high when not every patient with an MS diagnosis has MS. It could be that the symptoms that led a neurologist to misdiagnose a patient with MS are the CCSVI symptoms.

That certainly is one possibility.

This is just one example of the many questions that still need to be answered about CCSVI. Given that CCSVI has only been a subject of intense investigation for about two years, the fact that we have more questions and answers isn't surprising.

Marc, thank you.
Cece, I completely agree with you that the symptoms of "MS" could very well be CCSVI symptoms. As Dr. Sclafani said, "this may be the case, but it will take years of study before we know."