Comments on Wheelchair Kamikaze: CCSVI (the Vascular Theory of MS): Separating Fact...

Doppler of my Jugular (neck) revealed 8mm left, 4m...

2010-08-15T17:51:50.960-04:00

Doppler of my Jugular (neck) revealed 8mm left, 4mm right.
Does anyone know size of concern? Im a 40yr old male.

My daughter has PPMS for the past 12 years and is ...

2010-06-27T15:54:49.868-04:00

My daughter has PPMS for the past 12 years and is bed-ridden and basically unable to tend herself. The CCSVI procedure obviously grabbed my attention. She had been taking various medications over the years and has not had any positive effect from any of them except from the occasional placebo effect when she started a new treatment. While I don't know all their names, betaferon and various steroids come to mind.
With the high failure rate of these meds, I tried to find out about all the double-blind testing and approvals they should have had. Came up dry! Various responses such as "Its none of your business." "Its not publicly available." "You wouldn't understand it." [after a career that included testing and statistical evaluation of results].
I've come to the conclusion that while these meds were supposedly "approved", it was likely on the basis of "they might help if we're lucky."
Does anyone have access to the testing of these toxic and debilitating chemicals? How can they be approved if they fail to help the patients?

MS being a vascular issue makes a lot more sense t...

2010-06-01T19:52:50.017-04:00

MS being a vascular issue makes a lot more sense than it being a so called, "auto-immune disorder." When you look at MS and some other diseases, they seem to be associated with acidic blood or tissues. If this is so, then that would make sense that a person with MS would have increased symptoms if they eat something that causes the blood to become more acidic, for example carbonated drinks. These drinks are filled with CO2. CO2 causes the blood to be acidic. If the blood or tissue is acidic, it can cause a slow break down of the veins. Specifically, the veins are composed of collagen and elastin. Both are broken down in acidic conditions. Yes, I know that if you test most people their blood doesn't present as acidic, but one has to understand that many people are very sensitive to even the slightest changes in their bodies, even changes so small that they can't even be detected. I suspect that MS, as well as many other so called auto-immune disorders, are caused by a venule break down. Meaning, for some reason, the bodies veins start to pull back or break down. When this starts to happen they become sensitive to even small changes like carbonated drinks or anything that is acidic. Think about this for a second, if this is true then, areas that are most vascular will have some kind of issue. Now unfortunately, in many people with MS, it might only be a vascular issue in the areas that only affect the CNS. But what happens when this issue spreads to glandular areas like the thyroid, or other glandular areas? These areas are very vascular. That means that if you are having a vascular issue, there is a possibility that you may face a whole new set of symptoms if glandular areas are affected causing hormonal depletion. Unfortunately, past research was not being focused in areas other than immune suppression. In the past I believe researchers were looking too deep into this issue instead of looking at the surface. Basically, I equate most of the past research in MS with a car, in that researchers were trying to learn why the car wouldn’t go by researching the molecular make up of the rubber in the tires instead of just checking to see if the oil was properly circulating around the engine. The later being simpler, but unfortunately, many researches tend to be over achiever, basically honors students when they were in school. I use to have a colleague that taught honors science, and he always stated, "you want to make a mountain out of a mole hill, ask an honors student." Enough with this way of thinking. Let's start checking the oil flow in the car instead of getting so complicated with the makeup of the rubber in the tires.

Marc, The non invasive testing could be an importa...

2010-04-14T16:33:07.243-04:00

Marc, The non invasive testing could be an important diagnosis tool for the kids of MSers.

See confirmation of Zamboni's results from Uni...

2010-03-26T08:09:21.559-04:00

See confirmation of Zamboni's results from University of Buffalo's first blind study on CCSVI started in April 2009.

http://www.buffalo.edu/news/fast-execute.cgi/article-page.html?article=109370009

Surprised this has not got a lot more publicity.

Hang in there you guys. We all wish you luck.

2010-03-03T20:44:48.667-05:00

Hang in there you guys. We all wish you luck.

Importantly, this is not an issue for a neurologis...

2010-02-10T14:58:35.541-05:00

Importantly, this is not an issue for a neurologist to advise you on. This is a matter for the most capable Cardiologist you can find in your area. Veins are generally worked on less than arteries, but work on both types of blood vessel is ongoing. In any area there will be people who specialize in vein work, who will have a very clear idea what to do, and not do. A couple of opinions would be good, but importantly, this part of the puzzle is not something a neurologist can advise you on and a good neurologist would be the first to tell you so. It is outside their area of training.

This seems to me to be a puzzle of many parts: veins develop poorly (in northern climes, perhaps due to Vitamin D insufficiency) and over time iron builds up in the brain, causing damage that the body struggles to repair. If any part of that chain can be broken, or reversed, there is a chance the entire disease process can be halted and that the body, or stem cell therapy, or some other process can repair at least some of the existing damage. I think most people with MS would be thrilled with even as little as a 30% recovery.

I think going into the matter with the understanding that it is a neurological problem, a problem of toxicity and a circulatory problem, all linked together, makes it easier than seeing it purely as something to discuss with a neurologist. All I can say is that so far a fairly low-key approach has worked well for us. We have what I would describe as a cordial partnership with a group of physicians, who would purely love it if a surgical solution could be found for MS. And so would we all.

It’s Dear Friend, a fact: if you want your website...

2010-01-29T05:42:57.777-05:00

It’s Dear Friend,
a fact: if you want your website to make you money, generate leads or get subscribers you have to advertise in order to drive traffic to it. Of course this is true for any business, but it is absolutely essential for online business.

www.onlineuniversalwork.com

I have an MS diagnosis for 5 years now. I did an u...

2010-01-26T16:12:32.342-05:00

I have an MS diagnosis for 5 years now. I did an ultrasound last month and they found that I have a stenosis in one of the jagular veins. Does anybody know of a place to do the operation? I leave in Ontario

If excess iron is being deposited due to venous ab...

2010-01-25T23:18:13.715-05:00

If excess iron is being deposited due to venous abnormlities, one wouold expect that epidemiologists would have already noted a correlation between MS and blood iron levels. Anemics, for example, would be less likely to have severe symptoms, etc.

That all those studied that had MS also had venous abnormalities seems persuasive, but "abnormality" seems rather subjective. It does seem unlikely that MS could cause such narrowing, though. Perhaps "MS" covers several different disorders, one of which can be improved by opening the vein.

The testimony of Ruth SG is heartening, but we would want to now how she is doing, say, six months or a year after the operation, when any placebo effect --- if present --- would be less intense.

We would also like to know whether this will cure damage already incurred or prevent future damage or both.

Nice to have an alternative to immune-system-suppression, if this does work.

Hi Marc. YOU ARE AMAZING! just finished watching ...

2010-01-21T00:47:18.065-05:00

Hi Marc.
YOU ARE AMAZING! just finished watching your wheelchair adventures thru Central Park, my old stomping ground. I cannot tell you what joy it has brought to me. I have had MS for over 20 years & although I can walk into a friend's house or a restaurant w/ my walker, I am wheelchair bound at home & have a scooter for outside activities. I am also an RN who worked for 8+1/2 yrs w/ my MS, but it got too dangerous for me to continue as I worked in the OR. I went to a cane, then a walker & now my w/c. I had an experimental Bone Marrow Transplant back in 2002 which halted progression according to my MRI, but I am very slowly getting worse. It has slowed it down considerably. I deal w/ the fatigue, the spasms, the pain & do what I can & am looking forward to the release of Amaya to maybe help improve the little bit of assisted walking I can manage now. This new aspect of CCSVI
is intriguing me, altho I am not 100% sold on it. I loved your article, you are very precise at what you write, just as you are on your w/c videos. But---U throw in much needed humor as you roll along. Especially loved the AUDREY HEPBURN one. I will research the CCSVI & follow it to see if there is really any merit in doing it, as there is not enough progress yet. I cannot tell you how I have enjoyed this website, all the pix & videos. Your lighthearted way of talking & describing the "curb cut" as you call it, amused me beyond anything I have seen in a while. This infuriates me also, things that are not accessible. I was born & raised in Manhattan, but have lived in Central NJ for 38+ yrs & I go thru the same problems here when I go somewhere. We call them "sidewalk divits" but I like yours better. I would like to keep in touch but when u click on your "email me" postcard, it won't let me email you thru my aol mail account. Could you post your email address so I can write to you privately? It is so hard to find someone who understands exactly what the vision of living your life in a w/c, "BELOW" everyone. I SO ENJOYED ALL THE VIEWS, THE TATTOO, THE BELLIES, THE FALLING DOWN PANTS!! Your comments are priceless, very laughable & imaginative & I enjoyed them all. I will continue to follow you & hope to remain in touch. Maybe someday my husband & I will meet you & your wife, it would be an honor! Thank you again for a wonderful 2 hours I just spent here. Sincerely, Ree K*

Hi Marc, Read your summary with great interest. E...

2010-01-20T17:05:40.100-05:00

Hi Marc, Read your summary with great interest. Excellent work. Lovely photos. I had the diagnosis and the treatment in Poland on Dec 29th of 2009. I had stenosis of the left jugular vein. It was opened by balloon, no stent. I am much improved. Especially significant relief from the severe fatigue which had previously made my life just about intolerable. The results started immediately following the operation and I have been steadily improving. While I was not fully aware of all the risks, you so well describe, I still would have gone ahead as my situation was getting worse. The doctors were extra cautious as I am older and had MS for over 30 years, but still mobile and driving. My husband tells me that I am becoming my "old self" before MS progressed. I sincerely hope that some large scale clinical trials will be started. I have an appointment with MS physician tomorrow. All the best to you and yours. Ruth SG

My name is Rick, I was diagnosed with MS back in 2...

2010-01-18T14:16:37.867-05:00

My name is Rick, I was diagnosed with MS back in 2001 and it was thought to be mild and non progressive to the point of being wheel-chair bound. Wishful thinking, I was later, around 2004, reclassified as Primary Progressive MS. I'm still able to get around via a walker albeit dragging my all too dead left leg/foot. I recently brought this discovery to my family doctor's attention and he was only to willing to set up an appointment to have an ultrasound of my neck arteries. The results were negative so my hopes were somewhat dashed. I'm thinking that this was a good finding but I don't believe it was conclusive. There are more veins and arteries from the brain to the spine etc.that may be compromised but as my Dr. had alluded to, a cardiologist may have to be summoned next. Basically it is what it is and until we are closer to cause and cure with the ongoing research be brave and address one day at a time.

I'm kinda late coming in, but this blog was ju...

2010-01-12T22:48:32.797-05:00

I'm kinda late coming in, but this blog was just referred to me. I enjoyed it, and the comments very much. It's not just hypothetical to think that pharmaceauticals will try to downplay this. Have you noticed that nothing is airing on TV at all? We are gonna need to be a loud voice on this subject if we want to be heard.

I find the correlation between EBV and CCSVI inter...

2009-12-29T11:49:40.205-05:00

I find the correlation between EBV and CCSVI interesting. I have a blood clotting disorder and I have had a deep vein thrombosis in my left popiteal vein 7 years ago. I was just diagnosed with MS on November 30, 2009 after being numb from the chest down for months which happened mid Sept. Is there any other material on these two being linked and how do you know if you have EBV?

Des in PA

I beg to differ with Anonymous, above. I just joi...

2009-12-22T23:48:45.999-05:00

I beg to differ with Anonymous, above. I just joined www.thisisms.com today because of the discussion threads on CCSVI. Realize, Anonymous, that the threads are recent and are down toward the bottom of lists. Please give it a second look.

Has anyone heard anything new? It realy bothers m...

2009-12-21T15:45:01.746-05:00

Has anyone heard anything new? It realy bothers me that I realy dont know if CCSVI is just wishful thinking or a whole lot more.

Just a thought I need to share;

'ThisIsMS' was a suggested as an unbiased place to read interesting threads.
OK True, but why is it that their 'Home Page' contains nothing on a subject like CCSVI but lots on subjects like LDN and copaxone, even MS voodoo remedies such as Goat Serum. I would suspect there are sponsorships behind this web site that are not completely forthcoming. Lots of news on drugs, very little on CCSVI.
Oh sure, you can join a thread but they're not offering any information, you need to find that yourself, pathetic and their selfish interest is shamefuly transparent.

ok, anyone have the vascular imaging/ballon proced...

2009-12-18T02:11:47.715-05:00

ok, anyone have the vascular imaging/ballon procedure/stenting done in the metro NY area? This is crazy that we can't find a facility where they really want to get involved.
Research what?? are they damn blind?
michele RN

Oh man, will someone help me light a fire under th...

2009-12-16T16:34:35.237-05:00

Oh man, will someone help me light a fire under the arse of mother research. It's high time we do get pushy. Trust me, you dont want them taking forever in clinical trials just so big pharma can shuffle their money around and people can get paid.
Dont tell me your protecting me while I progress.....give me the stent you have now thank you. Not into tooling around in my chair if I dont have to. Id gladly die trying to save myself.

Raise hell, light a fire and maybe the end result might help you sooner rather than later.
For decades groups that supposedly represented you overlooked something as basic as the vascular system...

Like I said, GIVE ME A BREAK..PATIENCE MY ARSE!

Hi Marc, Thanks for an excellent summation of CCS...

2009-12-15T01:20:31.179-05:00

Hi Marc,
Thanks for an excellent summation of CCSVI. I am an RN and was quite impressed by your writing and knowledge. I have a very close friend with MS and I am constantly pushing him to change neurologists and to even try stem cells.
Does anyone know in the NY area who is specializing in the doppler imaging of the veins and arteries. While it is a basic procedure that can be done anywhere I would rather my friend with MS go to someone who has a positive outlook on the procedure. Unfortunately my friend neuro in NY has a lame attitude which may come from being a paid consultant to a major drug company that produces MS drugs.
michele RN

My theory is that there are two distinct processes...

2009-12-14T11:05:26.296-05:00

My theory is that there are two distinct processes. One that creates true MS symptoms (based on neurologist findings) and the other that due to physiological abnomalities, causes similar symptoms to MS but is not true MS. An MS-Doppleganger (MS-D). I think the people who are showing progress with the Zamboni procedure might have MS-D. The people who have had the Zamboni procedure and have not improved might have the "true" MS and be treatable by medications....OR...they might have disease that has progressed too far to produce irrevocable damage to the nervous system that no treatment can cure.

Marc, Ed, everyone I think this post represents a...

2009-12-07T11:53:15.312-05:00

Marc, Ed, everyone

I think this post represents an unbiased summary of the CCSVI finding.

Great work! I am part of a rapidly growing group on facebook called CCSVI in ms and there has been tremendous news and updates around this but I believe this post represents an accurate representation of the most prominent arguments.

All the best

Josef

This site is very informative. Regarding CCSVI and...

2009-12-06T15:04:18.214-05:00

This site is very informative. Regarding CCSVI and MS, the discovery is promising but vurnetable to be undermined by the neurologists following the traditional line and the associated drug companies.
Thank you

Hi Marc, your insights are really worth reading. I...

2009-12-06T14:38:47.635-05:00

Hi Marc, your insights are really worth reading.
I have only discovered your site as a result of the CCSVI explosion but it has helped me enormously.
I apoligise fro the spelling in the above post. It was writen on a friday night with too much red wine inside of me.But at least I can spell sceptical.
Des, Glasgow. Scotland.

Hi Marc, I agree with Des Love, Herrad

2009-12-05T12:55:01.827-05:00

Hi Marc,
I agree with Des
Love,
Herrad