It's a procedure - not a cure

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

Postby DrCumming » Tue Jan 04, 2011 6:33 pm

Cece wrote:
mjc701 wrote:That would make sense. Unlikely that the media could have come up the term on their own :D

But now that they've got it, I don't think they'll ever let go. I'd like to see it retired too. I would also like to see any media attention (ok, positive or neutral) in the US! 50% of people in Canada know of CCSVI; that cannot be said here.


Media coverage has been good in Canada and dismal here.

I am friends with a local tv news anchor here and their medical department was not interested...

Now if patients sent me a few emails with their experience (good or bad) to forward to him, I might be able to press the issue harder.
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Postby DrCumming » Tue Jan 04, 2011 6:46 pm

CD wrote:In Canada it is on TV and in the newspapers all the time. Petitions signed and flash mobs.

Here, where do we see or hear of CCSVI ?- only on the Internet or the negative/ or wait articles from the NMSS and Neurology Now magazines.

Last time I saw my Neuro, three months ago, I said I will get this, as I held up her Neurology Now magazine in her office. I said I will get this underground if I have to. She just replied, "Too early." I am to see her the end of this month. Hmm.. to tell or not to tell, that is the question?

I wonder if she will dismiss me as a patient? Can she do that?


There are rules around how a physician discharges a patient. I cannot remember all of the details but one is that they must make a reasonable attempt to find you alternative care.

You definitely should inform them. I always want my patients to disclose any pertinent information regardless of what they may think that I think of it. Otherwise it makes hard to give the best care I can.

If they judge you harshly, then move on. Its your life. You walk in your shoes, and anyone should be cautious before passing judgement until they have lived and experienced your life.
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Postby CD » Tue Jan 04, 2011 6:59 pm

mjc701 wrote:
CD wrote:In Canada it is on TV and in the newspapers all the time. Petitions signed and flash mobs.

Here, where do we see or hear of CCSVI ?- only on the Internet or the negative/ or wait articles from the NMSS and Neurology Now magazines.

Last time I saw my Neuro, three months ago, I said I will get this, as I held up her Neurology Now magazine in her office. I said I will get this underground if I have to. She just replied, "Too early." I am to see her the end of this month. Hmm.. to tell or not to tell, that is the question?

I wonder if she will dismiss me as a patient? Can she do that?


There are rules around how a physician discharges a patient. I cannot remember all of the details but one is that they must make a reasonable attempt to find you alternative care.

You definitely should inform them. I always want my patients to disclose any pertinent information regardless of what they may think that I think of it. Otherwise it makes hard to give the best care I can.

If they judge you harshly, then move on. Its your life. You walk in your shoes, and anyone should be cautious before passing judgement until they have lived and experienced your life.


Thank you. That was a vey nice answer to my question. Two years ago I asked her for LDN. She said no, she could not prescribe it. The next morning she had her receptionist call my PCP, then called me. She told me to pick up the script from him, it would be ready. She just said it was not in her practice to prescribe that drug.

Yet her colleague at the local MS center was prescribing it, she said he could monitor me. She saw the difference LDN made in my life and is now a believer. I, too, was a naysayer for years. After Avonex and Copaxone, LDN was a pleasure.

.
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Postby Cece » Tue Jan 04, 2011 8:38 pm

mjc701 wrote:Media coverage has been good in Canada and dismal here.

I am friends with a local tv news anchor here and their medical department was not interested...

Now if patients sent me a few emails with their experience (good or bad) to forward to him, I might be able to press the issue harder.


BadCopy?
nellie?
JCB?
zap?
who am I forgetting???
We have a pretty good MN/Midwest group of posters here, someone might take you up on this!

Did your friend say why the medical department was not interested?
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