Uncomfortable silence

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Uncomfortable silence

Postby RedPepper » Sat May 15, 2010 6:16 am

I had a dream or else I'm losing my mind or maybe it really happened.

I realised lately that I never saw my neurologist in the absence of the MS nurse. I was eager to talk to him about CCSVI and did - but again in the company of this nurse. After we had done so, by coincidence when the nurse was taking a blood sample, the needle dragged in my arm. It hurt but not an awful lot - (I didn't scream) - and blobs of blood (about four) came out. I couldn't believe it when she got cotton wool and mopped it up in bare hands. She said "See, you have great veins."

It was not the first time I brought up CCSVI so I suppose I'm being annoying. But I sent chapters about venous insufficiency in MS from a book written by Roy L Swank in the 1970s which she said she would sent to the neurologist but I don't think the doctor got them.
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Postby Cece » Sat May 15, 2010 10:49 am

I think the neurologists are hearing about veins, veins, veins from many of their patients...certainly mine had a "not this again" attitude when I brought it up. But yeah I wouldn't appreciate hearing a joke at my expense on the matter....
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby mshusband » Sat May 15, 2010 11:02 am

I took the following from a blog - by a DOCTOR - who has been liberated from CCSVI ... it is his thoughts on Neurologists take on CCSVI. It mirrors exactly what I have been trying to say ... you learn something all your life and then some patient tries to tell you they know more than you have learned in all your medical schooling - it has to be hard for them. I think what he writes is SPOT ON. I DO have his permission to post this ...


~~~~~

SUNDAY, MAY 2, 2010

Neurologists
With new treatment options available for Multiple Sclerosis, now becomes a very intense time for those with this condition. It is also a big time for their doctors--mainly neurologists.

Neurologists study the brain and nervous system. This requires a very big, high functioning brain to comprehend this world and the language to describe it. I did not do well in neuroanatomy or neurophysiology. Frankly, it was over my head. My smart friends did well in this realm but they did not become neurologists. It takes a very smart and gifted person to be a neurologist.

Neurologists are now at the front lines in the management of CCSVI and MS. The theory goes against what they have known and learned about Multiple Sclerosis. The current mind set(auto-immunity) has been the glasses through which doctors see MS for over 30 years. People DO get better with immune suppressive drugs--steroids, interferon, tysabri, etc). It is quite shocking that the theory might not be complete. Really smart people have studied it for a long time. But the one thing the scientific world never figured out was why does someone's immune system would turn on itself?

The answer that CCSVI is a cause/contributor of this number one debilitator of young people is shockingly simple and basic. Why didn't we figure this out earlier? The plaques are surrounding the veins around the third ventricle. This has been known for a very long time.

It is very hard to realize and own that as a doc, you have missed a diagnosis or understood a situation incorrectly. I have been there more times than I wish to remember. It always is difficult to accept a change of perspective. It happens to all doctors and in fact all people. Everyone is wrong sometimes. We all can be blind and then learn to see. That is the beauty of learning and new experiences. That is what makes this human life so magical.

Somehow, we as a culture and society don't think doctors should be wrong. Especially not really smart doctors like neurologists. We think that since they are so smart, they must know. They(the neurologists) probably think this way also. They are probably not used to being wrong.

I am using strong language saying they were wrong. They just didn't see beyond the therapeutic intention. Once immuno-suppressives became the glasses through which we all saw MS, there was a funnel blinding us to the underlying process. All therapy was geared to suppression of a wayward immune system-- harnessing the monster.

But now we we know what makes the immune system go haywire and attack the main computer. It is errant plumbing. Why? Still not known. It will eventually be known. I bet pretty soon now that the field has been opened wide open.

I don't blame neurologists for not knowing. They have only been doing the very best that they can. But now, the true challenge comes: leading us forward with the new knowledge that we have. Incorporate and move forward. CCSVI is real and a very important part of the MS mystery. All the details have yet to be determined, but its contribution is no longer possible to deny. The immune system is still involved. There is just a reason FINALLY for why the immune system goes crazy, turning on self.

The MS community absolutely needs their docs. The doctor-patient relationship is sacred. Every patient that I have spoken with respect and love their doctors. Patients will always seek out relief in any form. Energy may not be as easily quantified or charted but it is the fuel of life. Without it life is very different. A lot darker. A lot harder. With more time, the neurologic changes may get better. With energy, all is possible. It may mix with the placebo effect but so what. Energy does matter to life and to any condition. Please do not forsake the CCSVI theory because the neurologic changes don't improve instantaneously.

In the presence of true energy, all healing is possible. This is basic relativity theory. We would never diagree with Einstein. He was the smartest of all scientists. Come back to the game; our game. Join the patients in changing their matter. This is not an intellectual battle. This is our lives. We need you. Together, we can stop the devastation that MS reaps.

Now is the time to truly help millions of people. Be open. Learn with us. Be part of something truly miraculous.
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Postby Daisy3 » Sat May 15, 2010 11:17 am

I did not post before because when I read it, I laughed. I'm sorry, but I actually imagined myself in that scene, and heard the words being said to me. So I laughed..still, I understand that it can't have been nice to have that happen to you.

MShusband, which blog did you get that from? would not mind a look..
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Postby RedPepper » Sat May 15, 2010 6:43 pm

It was great to read you, thank you all. It helps to focus on what is important and not to sweat the small stuff!

On a humorous note because it is very late ...
Daisy, since you laughed - the scene was like this ;)
http://www.youtube.com/watch#!v=PeyWpKKcYpI
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Postby ndwannabe » Sat May 15, 2010 9:19 pm

I loved reading the Doctor's perspective. It's useful to look at things from another angle now and then...

Thank you mshusband!
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Postby Daisy3 » Sun May 16, 2010 3:42 am

RedPepper wrote:It was great to read you, thank you all. It helps to focus on what is important and not to sweat the small stuff!

On a humorous note because it is very late ...
Daisy, since you laughed - the scene was like this ;)
http://www.youtube.com/watch#!v=PeyWpKKcYpI


No specific video comes up...send the link again?

Daisy:-)
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Postby cah » Sun May 16, 2010 4:04 am

The forum system thinks that the link ends at the "!".

But the link also works with a "?" :)

http://www.youtube.com/watch?v=PeyWpKKcYpI
"There is only one good, knowledge, and one evil, ignorance." Socrates
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Postby mshusband » Sun May 16, 2010 8:32 am

I don't want to post his blog link directly online without his permission.

He frequents this site (though I don't think he's ever posted) - but he mentions the site in his blog.

He's had (though I don't want to speak for him in anyway as we've never met and only communicated by email a few times) what I would consider significant improvements as a result of the liberation treatment.

Maybe if he reads this he will post a link ...
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Postby thornyrose76 » Sun May 16, 2010 6:50 pm

The nurse at my clinic had the nerve to say to me upon ssuggesting they do a study where I live (wpg) that " Well, we can let other clinics do studies and we can benefit from their work."
Great I can sit back and continue to deteriorate is all I said in response, as another 2-5 years goes by, possibly more. Me and everyone else. It's insulting some of if not all of it. :evil:
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Postby belsadie » Mon May 17, 2010 10:59 am

I still refuse to give any head space to rationalizing many [not all] neurologists' refusal to at least entertain the CCSVI condition as super important in the definition/explanation of MS!!! Why are they attached at the hip to treatments that they, themselves, admit "probably don't work" in many [too many] cases? I have worked with many physicians in my practicing over many years and learned early."Don't question the doctors". Let me tell you, if you dare to, you're labeled a troublemaker or a Doctor wanna be...Imagine.... How arrogant. Many are socialized throughout their education to believe that they are smarter, more entitled, elite among men, and better be treated like that. Please remember, I said most, not all.
When something hits you in he head, shouldn't' you at least try to find out what it is? When a new idea comes along, why not investigate with an open mind!???? Medicine is an Art, not a Science. I think we can all testify to that. Theories have been proven and disproven throughout history. Did they cut class on the day that was discussed?
How can so many self identified "elite among men" be so close minded?
We're not talking about what color to paint your room. This is the health of too many people. Get off your high horse and join the ranks of those who stand for right/reform/taking chances in the name of reason; and do it NOW. No more excuses-----PLEASE
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Postby BooBear » Mon May 17, 2010 11:52 am

Belsadie, you are on the money.

As much as we try to stay positive and direct our energy- especially our frustrated energy- towards making this test and treatment available for everyone, the sort of attitude that Belsadie describes is what makes this incredibly difficult for all of us to endure.

My old neuro (who I fired) was miffed that I signed up for a clinical trial (oral cladribine) without consulting with him first. When I asked him if he knew about the trial, he said he did not. So I asked him, "Then what would you have expected I do to get you to recommend me for it?" At the end of the conversation, I said, "Doctor, with all due respect, while you treat this disease, *I* live with it. If our roles were reversed, you would do exactly what I am doing now- everything you can to get better."

I like my new neuro a lot better, but I was disappointed in his reaction to CCSVI. Yes, he knew about it, but he incorrectly listed two deaths instead of two adverse reactions (yes, one death but we all know that story). And he is heavily involved in the MS Society, which makes me suspect now in general anyway.

Has anyone written the White House yet? Senators? Congressmen? Any result or response?
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Postby belsadie » Tue May 18, 2010 11:10 am

I have written yo my senator. congressman,and the President, himself. No response yet. We'll see....
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Postby Sport » Tue May 18, 2010 11:25 am

http://markkalina.blogspot.com/2010/05/ ... gists.html

(Look, if he didn't want people reading his blog he wouldn't post it on a public site hosted by Google no less.)
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