Some news

[L]

Zamboni's initial findings of 100% CCSVI in MS patients simply don't jibe with the known etiology and the prevalence of misdiagnosis in MS patients.

We can pretty much ignore the 15% misdiagnosed figure here I'd say - these were people who were referred by a neurologist, MS sufferers in the eyes of that neurologist who didn't have a clinically isolated episode but were confirmed sufferers. I might expect a few misdiagnosis slip through the net but with a larger population.

I don't see why 100% in this case is a red flag at all.

I should imagine that the 10-15% misdiagnoses figure is rather smaller with an experienced neurologist who is excluding CIS. Yes, I'd be very surprised if the misdiagnosis rate is so high at a university hospital such as Ferrara.

Incidentally, it took a whole two years after a suspected diagnosis for doctors to be quite certain that they had ruled other conditions out with me.

[Lyon]

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[Cece]

That 100% figure is more of a red flag than something to take comfort in. As I stated in my previous post, based on their experiences with thousands of supposed MS patients, the NIH estimates that 10-15% those diagnosed with MS actually suffer from some other illness. This means that given a reasonably sizable patient pool, even if CCSVI was THE singular cause of MS, we should only be finding it in 85-90% of people undergoing catheter venograms. Given that CCSVI is most likely not THE one and only cause of MS, a more believable figure would be much lower, somewhere in the neighborhood of the 60-65% found in the initial buffalo imaging study.

I've read some of this in your blog (fantastic stuff) and I am not sure what to make of it. With the in-practice findings being higher than you'd expect (Simka, Sclafani, Sinan) do you think they are overdiagnosing and overtreating?

Could it be that the people who are seeking out CCSVI treatment are people who have already done the work to eliminate other possible misdiagnoses (such as by getting thoroughly tested for Lyme)?

[marcstck]

Zamboni's initial findings of 100% CCSVI in MS patients simply don't jibe with the known etiology and the prevalence of misdiagnosis in MS patients.

We can pretty much ignore the 15% misdiagnosed figure here I'd say - these were people who were referred by a neurologist, MS sufferers in the eyes of that neurologist who didn't have a clinically isolated episode but were confirmed sufferers. I might expect a few misdiagnosis slip through the net but with a larger population.

I don't see why 100% in this case is a red flag at all.

I should imagine that the 10-15% misdiagnoses figure is rather smaller with an experienced neurologist who is excluding CIS. Yes, I'd be very surprised if the misdiagnosis rate is so high at a university hospital such as Ferrara.

Incidentally, it took a whole two years after a suspected diagnosis for doctors to be quite certain that they had ruled other conditions out with me.

L, I'm not sure if you're aware, but the NIH (National Institutes of Health) is the US government's medical research arm, and is staffed with some of the best and brightest medical minds the world has to offer.

The thousands of MS patients that they have studied were carefully screened before hand, a using case histories and previous diagnostic testing, before being included in their research studies. Still, upon further examination, 10-15% of these patients were found to have been misdiagnosed by their local doctors, most of them MS specialists.

We're not talking about cases of CIS here, but patients who would have had to clear the inclusion criteria for which ever one of the hundreds (or perhaps thousands) of studies that the NIH has conducted on MS patients through the years.

The 10-15% figure is as rock solid as you can get. The issue is of such concern to the National Institutes of Health that they have an ongoing longitudinal study being conducted specifically to weed out misdiagnosed patients and create a pool of patients they are confident actually have MS for use in further studies. Patients included in the longitudinal study undergo extensive 3T MRI imaging, lymphopherisis, a wide array of blood test, and careful spinal fluid analysis.

This long-term, far-reaching study would not have been initiated on some capricious whim, but rather came about because the research scientists at the NIH perceived a very real and very troublesome problem.

[L]

based on their experiences with thousands of supposed MS patients, the NIH estimates that 10-15% those diagnosed with MS actually suffer from some other illness.

(Marc is far from the only source of like info)

We can pretty much ignore the 15% misdiagnosed figure here I'd say

I might expect a few misdiagnosis slip through the net but with a larger population.

I don't see why 100% in this case is a red flag at all.

I should imagine that the 10-15% misdiagnoses figure is rather smaller with an experienced neurologist who is excluding CIS.

Yes, I'd be very surprised if the misdiagnosis rate is so high at a university hospital such as Ferrara.

Holy shit! Now that's a toughie! Whose word to take, trained and qualified neurologists at the National Institute of Health or a guy named L on the internet? A guy named L on the internet or trained and qualified neurologists at the National Institute of Health?

Incidentally, it took a whole two years after a suspected diagnosis for doctors to be quite certain that they had ruled other conditions out with me.

You are aware that there are many variables involved with MS and its diagnosis and depending on the presentation a few tests and a twenty minute appointment resulting in positive diagnosis can be every bit or more certain as other presentations when every test known to man and two years are needed for a half assed certain diagnosis.

It can also work the other way in that early treatment has been pushed so hard that the attitude also exists to a certain degree "if in doubt, err towards early diagnosis and treatment".

To hint that Silva or someone could resort to extreme measures to insure that MS cases really are MS is hinting that no one else is competent or goes to the effort to insure that the cases they diagnose are really MS and that is and has always been foolishness.

I stand by what I say - at a University hospital, with CIS excluded, I will bet that the misdiagnosis rate is not as high as 10/15%

It was a small study, people with CIS were not presented to Zamboni.

It seems like common sense to me. I think trained and qualified neurologists would agree with me. Next time I see one I shall ask him or her. You do the same.

[PCakes]

'trained and qualified neurologists' ..hmmm.. right side face numb..right eye sore.. the only tests performed..touch your nose and two mri's..results.. 3 or 4 lesions.. within 1 year I was refered to 3 different neurologists(unsolicited).. first one.. 'you have MS'.. second one 'I don't think you have MS'.. third one.. 'I don't agree.. I think you have MS and you should go on a drug regime right away!! it is your only hope' .. (I said 'no thank you' and found out later that this doctor was doing some research focused on CIS/early onset & drugs)..visit back to that same third guy 6 months later.. no new tests, looking at the same file 'I don't think you have MS..have a nice day'??.. I asked this one about CCSVI..it was not pretty..

All that nonsense aside..there is something wrong with me..and many others in my family.. CCSVI explains so much.. before CCSVI.. **go back to my first paragraph.

In Canada you can request/ suggest certain tests but for the most part we are at the mercy of the doctors.

There are many good neurologists in the world..I even believe this descibes the majority..well trained and well qualified.. without a doubt.. it's just too bad that so many of us have had bad experiences.. and that the tools of their trade are driven by money..we all want it and we all like to have it... it's not a conspiracy..it's a reality.. there is no money in a cure so the research required is minimal. We can't even fault the drug companies. Why would sony research sealife? it's not what they do. What are we left with Symptomatic "treat and street"Medicine.

[marcstck]

That 100% figure is more of a red flag than something to take comfort in. As I stated in my previous post, based on their experiences with thousands of supposed MS patients, the NIH estimates that 10-15% those diagnosed with MS actually suffer from some other illness. This means that given a reasonably sizable patient pool, even if CCSVI was THE singular cause of MS, we should only be finding it in 85-90% of people undergoing catheter venograms. Given that CCSVI is most likely not THE one and only cause of MS, a more believable figure would be much lower, somewhere in the neighborhood of the 60-65% found in the initial buffalo imaging study.

I've read some of this in your blog (fantastic stuff) and I am not sure what to make of it. With the in-practice findings being higher than you'd expect (Simka, Sclafani, Sinan) do you think they are overdiagnosing and overtreating?

Could it be that the people who are seeking out CCSVI treatment are people who have already done the work to eliminate other possible misdiagnoses (such as by getting thoroughly tested for Lyme)?

My hunch is that CCSVI's prevalence goes beyond the MS patient population.. The CNS venous system is so understudied that no one quite has a handle on how common or uncommon jugular and/or azygos stenosis actually is. It may be that some of these patients do have MS of a type that is totally unrelated to the blockages that are being found.

Keep in mind, the initial buffalo numbers showed close to one quarter of healthy subjects tested positive for CCSVI. We do know that the imaging techniques used in that study were less than ideal, but the doubt cast by this observation can swing both ways. The incidence of CCSVI in healthy subjects may be higher or lower than was indicated by the buffalo numbers.

[Lyon]

.

[L]

Zamboni's initial findings of 100% CCSVI in MS patients simply don't jibe with the known etiology and the prevalence of misdiagnosis in MS patients.

We can pretty much ignore the 15% misdiagnosed figure here I'd say - these were people who were referred by a neurologist, MS sufferers in the eyes of that neurologist who didn't have a clinically isolated episode but were confirmed sufferers. I might expect a few misdiagnosis slip through the net but with a larger population.

I don't see why 100% in this case is a red flag at all.

I should imagine that the 10-15% misdiagnoses figure is rather smaller with an experienced neurologist who is excluding CIS. Yes, I'd be very surprised if the misdiagnosis rate is so high at a university hospital such as Ferrara.

Incidentally, it took a whole two years after a suspected diagnosis for doctors to be quite certain that they had ruled other conditions out with me.

L, I'm not sure if you're aware, but the NIH (National Institutes of Health) is the US government's medical research arm, and is staffed with some of the best and brightest medical minds the world has to offer.

The thousands of MS patients that they have studied were carefully screened before hand, a using case histories and previous diagnostic testing, before being included in their research studies. Still, upon further examination, 10-15% of these patients were found to have been misdiagnosed by their local doctors.

We're not talking about cases of CIS here, but patients who would have had to clear the inclusion criteria for which ever one of the hundreds (or perhaps thousands) of studies that the NIH has conducted on MS patients through the years.

The 10-15% figure is as rock solid as you can get. The issue is of such concern to the National Institutes of Health that they have an ongoing longitudinal study being conducted specifically to weed out misdiagnosed patients and create a pool of patients they are confident actually have MS for use in further studies. Patients included in the longitudinal study undergo extensive 3T MRI imaging, lymphopherisis, a wide array of blood test, and careful spinal fluid analysis.

This long-term, far-reaching study would not have been initiated on some capricious whim, but rather came about because the research scientists at the NIH perceived a very real and very troublesome problem.

OK. I hear you. It's interesting. I shall talk to my neurologist. I hate to say it, but having no experience of the American health care system (except for a nurse, at whose house I was staying in Brooklyn, giving me a stitch on my chin, after I fell over drunk,) do you think that US health care and Italan health care (in this case at a teaching hospital) may vary in terms of quality? I have heard great things about the Italian health syste. Like I say, I have no experience of either myself.

Dr Salvi has his name to 100 or so papers. Most neurologists haven't published. It just seems like common sense that he's above average and therefore, given that he selected patients to be referred to Zamboni, he is less likely to have the high percentage of misdiagnosis amongst that chosen population.

Have you a link to the study, I'd be interested in reading it?

[L]

I stand by what I say - at a University hospital, with CIS excluded, I will bet that the misdiagnosis rate is not as high as 10/15%

It was a small study, people with CIS were not presented to Zamboni.

It seems like common sense to me. I think trained and qualified neurologists would agree with me. Next time I see one I shall ask him or her. You do the same.

"BET"?? "common sense"? "I think"?

Rather than pursuing this, I'm most comfortable leaving you to your opinion.

Well, you should! It's only my opinion. That's what we do on this forum, share opinions.. Marc is of the opinion that 100% is a red flag but I, in this case disagree. I'm not publishing it though. Just giving it!

[Cece]

My hunch is that CCSVI's prevalence goes beyond the MS patient population.

I wondered this too, especially with the Buffalo results, but then not sure what to make of Dr. Sclafani's statement awhile back that in his forty year career, he had never seen these sorts of jugular malformations before.

[L]

'trained and qualified neurologists' ..hmmm.. right side face numb..right eye sore.. the only tests performed..touch your nose and two mri's..results.. 3 or 4 lesions.. within 1 year I was refered to 3 different neurologists(unsolicited).. first one.. 'you have MS'.. second one 'I don't think you have MS'.. third one.. 'I don't agree.. I think you have MS and you should go on a drug regime right away!! it is your only hope' .. (I said 'no thank you' and found out later that this doctor was doing some research focused on CIS/early onset & drugs)..visit back to that same third guy 6 months later.. no new tests, looking at the same file 'I don't think you have MS..have a nice day'??.. I asked this one about CCSVI..it was not pretty..

All that nonsense aside..there is something wrong with me..and many others in my family.. CCSVI explains so much.. before CCSVI.. **go back to my first paragraph.

In Canada you can request/ suggest certain tests but for the most part we are at the mercy of the doctors.

There are many good neurologists in the world..I even believe this descibes the majority..well trained and well qualified.. without a doubt.. it's just too bad that so many of us have had bad experiences.. and that the tools of their trade are driven by money..we all want it and we all like to have it... it's not a conspiracy..it's a reality.. there is no money in a cure so the research required is minimal. We can't even fault the drug companies. Why would sony research sealife? it's not what they do. What are we left with Symptomatic "treat and street"Medicine.

This is interesting. Like I say in an earlier post, my diagnosis was two years in the making, even though I was pretty sure I had MS, and about 30 vials of blood were drawn for goodness knows how many tests (one session was 18 for sure, it was an ordeal, I remember the nurse said 'a dozen or so' on the next).

'We want to be careful to rule everything else out' my neurologist told me. He mentioned the ease of misdiagnoses.

When I was finally diagnosed I was glad that it was MS, having read up on the other candidates that fitted my symptoms.

[Lyon]

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[L]

Well, you should! It's only my opinion. That's what we do on this forum, share opinions.. Marc is of the opinion that 100% is a red flag but I, in this case disagree. I'm not publishing it though. Just giving it!

Another reason I don't want to argue with you??.....You won my respect with this statement:

(except for a nurse, at whose house I was staying in Brooklyn, giving me a stitch on my chin, after I fell over drunk,)

To be fair, 60% MS, 40% cocktails..

[Lyon]

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