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seeva

It appears CCSVI works for some but not all.



http://www.sciencebasedmedicine.org/the-end-for-ccsvi/



Like just about anything, there are positives and negatives, and there is no way of knowing for sure whether this is a worthwhile procedure.

Elliott,

The article you posted was from 2013 and a lot of good doctors have continued to look at the most effective way to deal with drainage problems for both blood and spinal fluid.

So take the word of a doctor you trust. But if that doctor can't fix what ails you, find another trustworthy doctor in a different field.

Here's the trick to finding other types of doctors. You have to go to various patient-run websites. Not ones run by the pharmaceutical companies who are looking to sell their product. As Sims points out, there's no research money in a cure that is just a simple procedure. Big pharma would like us all to have to take meds all our lives to keep symptoms at bay. Good doctors want to actually find the cause of disease and cure that. It's a whole different philosophy.

Neurologists look in your head and say the problem is that you have trees in your head. A doctor like Sims will also see that the REAL problem is that you also have dogs in your head and the dogs keep peeing on the trees and killing them. It all depends on your point of view. . .

It's all up to us as individuals to decide how much time, effort and money we can spend in trying to find a cure for what ails us.

I have read numerous articles that CCSVI works, and I have read many that say it does not, as well as reading some that say it works for a few years.

This procedure is certainly not the 'miracle' everyone with MS is looking/hoping for. Considering that the procedure can be a dangerous one, I will stick with 'safer' ways of getting more blood/oxygen to and from my brain.

Of course CCSVI doesn't always work. They don't know, and may never know, what causes it in a lot of people, myself included. If it's caused traumatically, or has had more of an influence on a part of the brain not so easily repaired as a shrunken jugular, it may not. That does not mean it is not worth it to try. It's a procedure that takes usually a few hours, with no general anaesthetic, and no hospital stay. It has risks, but in 61 years I have taken worse, and had nothing like the liability of a diagnosis of "MS". Usually. As with any procedure, unusual and unhappy cases can occur. Murphy says they will.

While neurologists are busy, testing drugs that mostly don't work, and getting paid handsomely, people could be getting on with their lives. I know. How do I know?

I was in a clinical trial for a drug that didn't work. While I was on placebo for two and some years, they put gadolinium into me every three months.

Ashton Embry, whom, if you are a person who should be reading ThisIsMS, you must have heard of, wrote many years ago of why he did not want his son to use MRI contrast agent gadolinium. That's how I know my luck had run out the day I was diagnosed with "MS". A good buddy of mine spent time in the woods doing geology with him, and knows and respects him. This buddy of mine is nobody's fool. I should have heeded Ashton.

I have just been listening to a CD of a book called "The Disappearing Spoon", by Sam Kean, about the discoveries of the elements, mostly, but also about medicine, chemistry (organic and inorganic), and the history of science in general. It has a lot to say about gadolinium. It is the recent toy of doctors, especially of the brain. It lights up MS lesions that are leaking blood (bleeding) because of gadolinium's unique chemistry (its electron spin, and magnetization abilities), the lesions being recently formed, and the fact that it's blood, which is carrying gadolinium. Blood contrast.

It has other properties, also mentioned in the book. It is potentially a cancer remedy, killing tumours as it goes radioactive and shreds tissue, especially cancerous tissue that has a growing, runaway blood supply. They show up well on MRI if you use contrast, for the same reason. I have some of it in the skin of my toes (it's heavier than blood). It also makes skin tougher than leather (more like wood). The FDA has warned of this in one of their multifarious documents somewhere. It also seems to be quite hard on your kidneys, which I know all about.

There are people on the Internet who sell it in "health" pills. Doctors love it.

So with my luck, my former neurologist (the one with the clinical trial) happens to be the most outspoken enemy of the CCSVI theory, or practice, or science, in my similarly unlucky country, which also has one of the highest rates of "MS". That's how I know about neurologists. Maybe not most of them. Just mine.

The book also talks about handedness. Left-handedness uniquely identifies living biology mammalian molecules (proteins), which was discovered by Louis Pasteur.

It doesn't extend to limbs or nerves or jugulars of people with "MS". But people can't use left-handed sugar, and don't have left-handed DNA. Handedness may figure in unexplored aspects of "MS". But it's likely to be on a micro, not macro scale.

Good book.

1eye wrote:I have just been listening to a CD of a book called "The Disappearing Spoon", by Sam Kean, about the discoveries of the elements, mostly, but also about medicine, chemistry (organic and inorganic), and the history of science in general.

That looks like an interesting book. Thanks.

Oh, and the gadolinium can dechelate and stick around in your body for a long time potentially leading to hyperintensities in the brain on unenhanced MRI. However, I suspect that it's still safer than getting blasted with x-rays during a CT scan.

http://www.thisisms.com/forum/general-d ... ml#p219763

Leaving aside the issue of heavy metals, while it remains important, I think this invalidates the use of gadolinium-enhanced lesion count and may even invalidate the use of un-enhanced lesions counted after it has already been used before the trial. At the very least, unenhanced data must always be collected whenever gadolinium is used, before the contrast is administered. If this is done as a routine part of the MRI exam, it may be possible to evaluate the possible damage being caused by the contrast itself.

Do lesions we are seeing as hyperintensities, really represent lesions which should not show up? Do they only appear because the contrast from the previous MRI persists? Do they make both treated patients and healthy controls look like they are progressing? Did Dr. Zamboni get better results because of not using gadolinium?

Lesion counts are often used to exclude SPMS and PPMS, both from being part of clinical trials, and from being counted with positive results from trials that show any drug's effectiveness.

The problem with that is that progressive cases, especially at the end of clinical trials which require regularly repeated gadolinium injections, are much more likely to show an increasing lesion count. This may even show that the placebo group did worse than the medicated group simply because they had had a greater number of MRI scans with gadolinium before the trial.

The problem cuts both ways. If gadolinium persists in a tumour, it may show the one result, which is that the tumour looks like it has grown, or that the tumour has not shrunk. It may show that the tumour still appears when new gadolinium is not used. This may mislead non-radiologists.

We know in enhancing bleeding lesions the gadolinium crosses the blood-brain barrier. That action may cause the lesions to get worse, especially if radioactive decay of the persisting gadolinium further damages the lesion. That area of the blood-brain barrier will be affected if the gadolinium persists, affected more, the longer it persists.

This is an example of observation affecting the thing observed, and the measuring tool affecting the measurement. It has nothing to do with Heisenberg's quantum uncertainty, but is still a real problem.

It is vital to inform patients of the possible outcomes after gadolinium is used. The effort to sweep this information under the carpet has resulted in many researchers and many expensive studies ignoring the facts. Therefore perceived scientific progress, if any, is probably invalid.

1eye wrote:We know in enhancing bleeding lesions the gadolinium crosses the blood-brain barrier. That action may cause the lesions to get worse, especially if radioactive decay of the persisting gadolinium further damages the lesion.

I don't believe that the gadolinium used in MRI contrast agents is radioactive.

Here's a list of several different gadolinium contrast agents from the Mayo Clinic.
http://www.mayoclinic.org/drugs-supplem ... gadolinium

From Wikipedia:

Safety
Main articles: MRI contrast agent and Nephrogenic systemic fibrosis

As a free ion, gadolinium is reported often to be highly toxic, but MRI contrast agents are chelated compounds and are considered safe enough to be used in most persons. The toxicity of free gadolinium ions in animals is due to interference with a number of calcium-ion channel dependent processes. The 50% lethal dose is about 100–200 mg/kg. No prolonged toxicities have been reported following low dose exposure to gadolinium ions. Toxicity studies in rodents, however show that chelation of gadolinium (which also improves its solubility) decreases its toxicity with regard to the free ion by at least a factor of 100 (i.e., the lethal dose for the Gd-chelate increases by 100 times).[20] It is believed therefore that clinical toxicity of Gd contrast agents in humans will depend on the strength of the chelating agent; however this research is still not complete. About a dozen different Gd-chelated agents have been approved as MRI contrast agents around the world.[21][22][23]

Gadolinium MRI contrast agents have proved safer than the iodinated contrast agents used in X-ray radiography or computed tomography. Anaphylactoid reactions are rare, occurring in approximately 0.03–0.1%.[24]

Although gadolinium agents have proved useful for patients with renal impairment, in patients with severe renal failure requiring dialysis, there is a risk of a rare but serious illnesses, called nephrogenic systemic fibrosis (NSF)[25] or nephrogenic fibrosing dermopathy,[26] that has been linked to the use of four gadolinium-containing MRI contrast agents. The disease resembles scleromyxedema and to some extent scleroderma. It may occur months after contrast has been injected. Its association with gadolinium and not the carrier molecule is confirmed by its occurrence in from contrast materials in which gadolinium is carried by very different carrier molecules.

Current guidelines in the United States are that dialysis patients should only receive gadolinium agents where essential and to consider performing an iodinated contrast enhanced CT when feasible. If a contrast enhanced MRI must be performed on a dialysis patient, it is recommended that certain high-risk contrast agents be avoided and that a lower dose be considered. The American College of Radiology recommends that contrast enhanced MRI examinations be performed as closely before dialysis as possible as a precautionary measure, although this has not been proven to reduce the likelihood of developing NSF.[27]

I think what I have in my toes is necrotic fibrosing dermopathy. The reason for special timing in dialysis patients is so that the dialysis will get rid of the gadolinium.

I have frequent kidney pain and have had several kidney stone incidents.

I agree with you that the radioactive gadolinium isotopes are not used for contrast. The cancer application involves gadolinium's special ability to capture free neutrons.

However the skin and kidney toxicities are of concern. I am not convinced there is no danger of gadolinium after it has infiltrated lesions into the brain.

There is a PhD paper on gadolinium

IN VIVO DETECTION OF GADOLINIUM BY PROMPT GAMMA NEUTRON
ACTIVATION ANALYSIS: AN INVESTIGATION OF THE POTENTIAL
TOXICITY OF GADOLINIUM-BASED CONTRAST AGENTS USED IN MRI
By
JAMES L. GRÄFE, B.Sc.
A Thesis
Submitted to the School of Graduate Studies
in Partial Fulfilment of the Requirements
for the Degree
Doctor of Philosophy

which has the following text:

8.2.3 Kidney impaired population
Much of the toxicity of Gd-based contrast agents has been demonstrated in the kidney impaired population. The proposed method of toxicity in this group is due to the prolonged time the agents will be in body (because of reduced excretion capacity) and thus the greater chance for release of Gd from the chelate from in vivo transmetallation due to competition with other endogenous cations. These agents are now contraindicated for use in people with end stage renal disease. However, there are some cases where people with poor renal function are administered Gd-based contrast agents because the particular diagnosis is a benefit worth the risk of exposure. In addition, there is the potential for many people currently living with NSF who have mild or subclinical symptoms and are undiagnosed to be exposed (Marckmann 2011). This technique could therefore be used as a companion diagnostic tool for asymptomatic NSF cases potentially to investigate the retention of Gd and its role in disease development. The distribution in the kidney and liver could be determined, and results could be compared with skin biopsy measurements as well as bone measurements. Since the leg muscle measurement is a very low radiation exposure the muscle measurement could also be performed in combination with these organ and tissue measurements. Relationships could be determined with dose administered and the type or brand of Gd-based contrast agent administered.