Cece's turn

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

Re: Cece's turn

Postby Cece » Thu Aug 23, 2012 9:24 pm

NZer1 wrote:Good news overall then.
Be great to take Sal as your support person to the Neuro appointments! :)

Keep smilin',
Nigel
He'd be no match for Sal! He'd be no match for me if we were talking reasonably. But how do you counter the emotion and the I-know-better-than-you antiCCSVI opinions? From my perspective he is delusional on CCSVI, and from his perspective I am.

Good news overall. It was always confusing to be told I had benign MS when I was profoundly affected with the fatigue and cogfog and feeling ill. And now I understand myself to have had benign MS coupled with severe CCSVI, and the CCSVI has been treated, and I consider myself awfully lucky.
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Re: Cece's turn

Postby Cece » Thu Aug 23, 2012 9:42 pm

cheerleader wrote:Sorry, Cece. What a drag. Jeff can relate. He got the lecture to start Tysabri from his neuro last spring (even though he has no new symptoms, no inflammation, no new lesions, reduction of gray matter atrophy and huge symptom relief.) She told him he was "lucky so far"--no thanks to venoplasty three years earlier, or lifestyle and diet changes. He was a man, and was going to progress and want a stronger drug. Unbelievable. So much negativity....not good. But that's what they are told to do at every single pharma conference/meeting/salespitch they attend. Hang in there--and enjoy your life.
cheer

I consider Tysabri a drug of last resort, considering the side effects, and for him to be asked to consider it when he's doing as well as he is? Makes no sense.

My neuro is doing a research study on BG12
109MS201 (Closed)

An Open-Label, Multicenter Study in Subjects with Relapsing-Remitting Multiple Sclerosis to Evaluate the Safety of 240 mg BG00012 TID Administered as Add-On Therapy to Beta Interferons (IFNβ) or Glatiramer Acetate (GA)

Purpose of study

To evaluate the safety and determine if the investigational drug BG0012, when taken in combination with another prescribed MS therapy, improves MS symptoms. You may be eligible for this study if you have relapsing-remitting MS, have been on an MS therapy for at least one year and still have symptoms.

Principal Investigator

Jonathan Calkwood, M.D.

Clinical Trial Sponsor

Biogen

Clinical trial sponsor Biogen

and here he is giving a presentation on BG-12
https://conferencecenter.msworld.org/cm ... le-with-ms

I think he genuinely believes it's a useful drug, but I think I'm with NHE on the idea of using other Nrf2 activators such as curcumin. What were those main ingredients of protandim again? Curcumin, green tea extract, and milk thistle. There was an abstract showing prontandim to be more effective than BG-12, I will have to find it, and bring it with to my next appt.

Sometimes pharmaceutical companies sponsor trials just to get the doctors comfortable with the drug. It's marketing, and it works.
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Re: Cece's turn

Postby Cece » Thu Aug 23, 2012 10:09 pm

Robnl wrote:strange kind of people...neuros :mrgreen:

But hey...you feel better and that's the most important!

rgds,

Robert

Thanks, Robert, I agree.
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Re: Cece's turn

Postby MrSuccess » Fri Aug 24, 2012 12:29 am

that is great news Cece. Benign. I would have gotten up , smiled .... and exited the building at that point ...... to sit and listen to - what I see as abuse - is credit to you.

What needs to happen is somehow reach out and educate the fresh young neuro's about to enter the field ..... BEFORE ...... BigPharma puts them in their pockets ..... :twisted: :idea:

Obviously ... there is NO money coming their way when patients undergo CCSVI treatment.



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Re: Cece's turn

Postby Cece » Fri Oct 05, 2012 2:47 pm

thanks MrSuccess

"The success of science has more to do with an attitude common to scientists than with a particular method. This attitude is one of inquiry, experimentation, and humility before the facts." - Paul G. Hewitt, Conceptual Physics, Second Edition, p. 3
I am grateful for the doctors who have had this attitude of inquiry, experimentation, and humility before the facts when it comes to CCSVI. There is something there to be investigated, when the crossfire is not obscuring it.
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Re: Cece's turn

Postby Cece » Fri Oct 05, 2012 2:57 pm

With the cooler weather and the kids back to school, I have been feeling great. Improvements are holding. It's nice that so much of what used to be the everyday background symptoms of my MS are gone now. Numbness, eye pain, blurriness, cogfog and fatigue. I had to comment here because of my improved color vision holding strong: it's fall colors time, which was a shock to me last year, and is a shock once again. Bright yellow trees and even the dead curled up leaves on the ground are yellow.
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Re: Cece's turn

Postby erinc14 » Sat Oct 06, 2012 8:13 am

Image i always like to hear good news
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Re: Cece's turn

Postby Cece » Mon Oct 08, 2012 12:33 pm

and I always like your emoticons :)

Here's a quote for the IRs and neurologists and those of us on one side or the other
“Let us, on both sides, lay aside all arrogance. Let us not, on either side, claim that we have already discovered the truth. Let us seek it together as something which is known to neither of us. For then only may we seek it, lovingly and tranquilly, if there be no bold presumption that it is already discovered and possessed.” ~St. Augustine~
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Re: Cece's turn

Postby NZer1 » Mon Oct 08, 2012 12:59 pm

:) Great quote Cece!
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Re: Cece's turn

Postby erinc14 » Tue Oct 09, 2012 7:50 am

Image
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Re: Cece's turn

Postby Cece » Thu Feb 07, 2013 1:56 pm

I am a few days shy of my 2 year anniversary of my CCSVI treatment. Hard to believe it's been that long.
:-D
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Re: Cece's turn

Postby Anonymoose » Thu Feb 07, 2013 6:19 pm

Cece,

That was a wonderful read. And you are a writer!! You need to publish your ccsvi story. Imagine the awareness you could raise!

Happy anniversary!!
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Re: Cece's turn

Postby HappyPoet » Fri Feb 08, 2013 8:47 am

Cece, CONGRATS on reaching this milestone!

moose, Cece's a published author, and I wholeheartedly agree she should write her CCSVI story.
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Re: Cece's turn

Postby Cece » Fri Feb 08, 2013 9:35 am

Published author of a single book by a small press publisher!
But it got a starred Publisher's Weekly review. "Dazzling debut"
I've got time, I would like to get back to writing again.
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Re: Cece's turn

Postby Anonymoose » Fri Feb 08, 2013 9:56 am

Cece wrote:Published author of a single book by a small press publisher!
But it got a starred Publisher's Weekly review. "Dazzling debut"
I've got time, I would like to get back to writing again.

How exciting! I want to read it!!
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