Cece's turn

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

Re: Cece's turn

Postby tiltawhirl » Sun May 06, 2012 2:59 pm

Cece wrote:It surprises and saddens me how much the ledge gets brought up in the MS community. I haven't had to face what some people have, with increasing physical disability. If at all possible, if the joy in life isn't finding us, we need to find it. Part of why I am here at TiMS is because being a part of the CCSVI community brings me joy. We are building toward this treatment being proven and available.

Ok, over the weekend, I have grown older and wiser. ('Twas my birthday yesterday.) All my focus was on whether or not my vein had lost that 2 mm, but if that did happen, it was right after angioplasty. So if I am on a slight downward slope with the colors less bright and occasional return of symptoms that had been gone, it would need to be caused by something that happened more recently, and so it would be some mild renarrowing, and the retrograde flow seen in the right jugular would support that theory. The flow there is definitely not straight down and out. And this is flow, which is Doppler's strength, not structure.

So, I probably have mild renarrowing with no significant loss of improvements. Mild renarrowing might slowly become moderate renarrowing or severe renarrowing, and no significant loss of improvements might slowly become some loss of improvements. I am afraid that this will happen and, when it does, I won't have access to the procedure anymore, if insurance companies disallow it, following Medicare's lead.

The procedure isn't expected to last forever. Maybe for some it does. The goal of tweaking techniques toward perfection is to increase the amount of time between procedures, with two to three years being a reasonable expectation. I'm right in line with that.


Happy belated Cece!

I think the ultimate exit comes up when what brings you joy has been snatched out of your hands. I played the drums for 25 years previously. As I became more disabled, that joy kept slipping. Enter ledge, without hope.

I made my before after video public specifically to pull some back from the ledge. Maybe I can help them see new joys. Just like I have.

tilt
...and I for one, welcome our new Neurologist overlords!

My before and after CCSVI treatment video http://www.youtube.com/watch?v=RhosV4_DvWw
Visit my Lego Amusement Rides website http://www.brickshelf.com/cgi-bin/gallery.cgi?m=Bolliger
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Re: Cece's turn

Postby David1949 » Sun May 06, 2012 3:30 pm

tiltawhirl wrote: Without hope, life somehow loses its appeal.tilt


Ditto that!


Also Happy Birthday Cece :-D
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Re: Cece's turn

Postby newlywed4ever » Sun May 06, 2012 4:27 pm

I think we can all remember the day we first heard of CCSVI. The day before that, we may have had unspecific hope. Then we delved further into knowledge and some of us underwent the procedure(s) - which gave us specific hope. Our CCSVI hopes have waxed & waned depending on personal experience but I think it's imperative that we remember the ledge we've all been on for one reason or another. And hope, with action, gives us a sense of purpose and goals. Knowledge is the key for change and we truly have come a long way in a relatively short time despite the frustrations of dealing with insurance companies, governments, big pharma, neurologists, etc., etc. And I will always remember the day before ever hearing about CCSVI. Who knows what tomorrow will bring?

Happy belated, Cece.
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Re: Cece's turn

Postby tiltawhirl » Sun May 06, 2012 5:03 pm

newlywed4ever wrote:I think we can all remember the day we first heard of CCSVI. The day before that, we may have had unspecific hope. Then we delved further into knowledge and some of us underwent the procedure(s) - which gave us specific hope. Our CCSVI hopes have waxed & waned depending on personal experience but I think it's imperative that we remember the ledge we've all been on for one reason or another. And hope, with action, gives us a sense of purpose and goals. Knowledge is the key for change and we truly have come a long way in a relatively short time despite the frustrations of dealing with insurance companies, governments, big pharma, neurologists, etc., etc. And I will always remember the day before ever hearing about CCSVI. Who knows what tomorrow will bring?

Happy belated, Cece.


Pretty powerful. Ty.

tilt
...and I for one, welcome our new Neurologist overlords!

My before and after CCSVI treatment video http://www.youtube.com/watch?v=RhosV4_DvWw
Visit my Lego Amusement Rides website http://www.brickshelf.com/cgi-bin/gallery.cgi?m=Bolliger
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Re: Cece's turn

Postby Cece » Sun May 06, 2012 7:36 pm

newlywed4ever wrote:And I will always remember the day before ever hearing about CCSVI.
Me too.
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Re: Cece's turn

Postby jillMEnz » Sun May 06, 2012 8:26 pm

Hi,

Where was the before after video?.

Would love to know your b4 and after story too cece

thnx Jill
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Re: Cece's turn

Postby FLJhawk » Mon May 07, 2012 9:47 am

Cece wrote:The procedure isn't expected to last forever. Maybe for some it does. The goal of tweaking techniques toward perfection is to increase the amount of time between procedures, with two to three years being a reasonable expectation. I'm right in line with that.


Happy birthday, too, Cece!

A goal with my own treatment was to at least delay the process and buy another year or two or three to allow other treatments to advance, i.e. stem cell, BG-12, or somethings else. Or just, simply, to have some more time having a reasonable quality of life before sinking downwards.

Most of us here, I am sure, appreciate your devotion to this board and for answering questions and providing support. It has really helped me, and I thank you and wish you the best and hope your improvements will remain.

Jeff
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Re: Cece's turn

Postby Cece » Tue May 08, 2012 7:53 pm

tiltawhirl wrote:I made my before after video public specifically to pull some back from the ledge. Maybe I can help them see new joys. Just like I have.

Your before/after video is amazing. Let's post it here too.
http://www.youtube.com/watch?v=guEgfwYb ... e=youtu.be
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Re: Cece's turn

Postby Cece » Tue May 08, 2012 8:01 pm

jillMEnz wrote:Hi,

Where was the before after video?.

Would love to know your b4 and after story too cece

thnx Jill

See above, for tilt's video. :)
I didn't make one of my own, since so many of my symptoms are hidden.

In case anyone else is playing, "Cece, how bright are the colors today?": for the last few days, the colors have been disturbingly bright.
I don't like that they get dim at times, but so far they keep coming back.
Last edited by Cece on Wed Aug 22, 2012 10:35 pm, edited 1 time in total.
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Re: Cece's turn

Postby Cece » Tue May 08, 2012 8:02 pm

FLJhawk wrote:Most of us here, I am sure, appreciate your devotion to this board and for answering questions and providing support. It has really helped me, and I thank you and wish you the best and hope your improvements will remain.

Thanks, Jeff. I wish you the best as well. We're all in this together.
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Re: Cece's turn

Postby Cece » Wed Aug 22, 2012 10:33 pm

Had a neurologist appointment. I am doing great. "Benign MS." He was very happy with the OCT and called it normal although there is slight worsening from four years ago but apparently that is called aging. Neuro exam turned up one thing that was new - triceps weakness - and that is what I hate most about neuro exams. You never know when something will turn up.

I have been sticking with my neuro because he is intelligent, he used to be likeable, he likes to run lots of tests and scans and I like that too, and he is a neuro-opthalmologist so I get care for my eye issues as well.

But he is on attack-mode when it comes to CCSVI. I was told that my IR was a fraud because he accepted insurance. I was told that all the research coming in on CCSVI was more and more negative, that it was nothing. I was told, again, that all his patients who'd had it done had only had three months of symptomatic relief, if that.

I got a high pressure talk about the need to be on a DMD, specifically BG-12 when it comes out.

I am saddened by the dismissiveness of my symptoms. There's a very long list of improvements that I've had. Cogfog, fatigue, vision, balance, bladder, foot drop, numbness. A year and a half and going strong. It is difficult to talk about MS without talking about those symptoms. Fatigue and cogfog were my worst symptoms by far.
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Re: Cece's turn

Postby Robnl » Wed Aug 22, 2012 11:43 pm

strange kind of people...neuros :mrgreen:

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

rgds,

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Re: Cece's turn

Postby NZer1 » Thu Aug 23, 2012 12:41 am

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

Keep smilin',
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Re: Cece's turn

Postby NHE » Thu Aug 23, 2012 1:35 am

Cece wrote:I got a high pressure talk about the need to be on a DMD, specifically BG-12 when it comes out.


BG12 is a strong oxidizing agent and has been reported by Biogen to cause chronic depletion of glutathione. This is a characteristic of several disease states such as ALS and Parkinsons and others.

Fumarates improve psoriasis and multiple sclerosis by inducing type II dendritic cells.
J Exp Med. 2011 Oct 24;208(11):2291-303. Epub 2011 Oct 10.

    Fumarates improve multiple sclerosis (MS) and psoriasis, two diseases in which both IL-12 and IL-23 promote pathogenic T helper (Th) cell differentiation. However, both diseases show opposing responses to most established therapies. First, we show in humans that fumarate treatment induces IL-4-producing Th2 cells in vivo and generates type II dendritic cells (DCs) that produce IL-10 instead of IL-12 and IL-23. In mice, fumarates also generate type II DCs that induce IL-4-producing Th2 cells in vitro and in vivo and protect mice from experimental autoimmune encephalomyelitis. Type II DCs result from fumarate-induced glutathione (GSH) depletion, followed by increased hemoxygenase-1 (HO-1) expression and impaired STAT1 phosphorylation. Induced HO-1 is cleaved, whereupon the N-terminal fragment of HO-1 translocates into the nucleus and interacts with AP-1 and NF-κB sites of the IL-23p19 promoter. This interaction prevents IL-23p19 transcription without affecting IL-12p35, whereas STAT1 inactivation prevents IL-12p35 transcription without affecting IL-23p19. As a consequence, GSH depletion by small molecules such as fumarates induces type II DCs in mice and in humans that ameliorate inflammatory autoimmune diseases. This therapeutic approach improves Th1- and Th17-mediated autoimmune diseases such as psoriasis and MS by interfering with IL-12 and IL-23 production.

BG-12, chemically known as dimethylfumarate, is an Nrf2 transcription factor activator. If you want to turn on Nrf2, then there are many natural products to do it. For example, an enhanced absorption form of curcumin such as BCM-95 curcumin or phytosome curcumin would be a good choice.

See this paper for a discussion of more natural Nrf2 activators...

Nrf2 as a Master Redox Switch in Turning on the Cellular Signaling Involved in the Induction of Cytoprotective Genes by Some Chemopreventive Phytochemicals
https://www.thieme-connect.com/ejournal ... 088302.pdf

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Re: Cece's turn

Postby cheerleader » Thu Aug 23, 2012 7:45 am

Cece wrote:
I got a high pressure talk about the need to be on a DMD, specifically BG-12 when it comes out.

I am saddened by the dismissiveness of my symptoms. There's a very long list of improvements that I've had. Cogfog, fatigue, vision, balance, bladder, foot drop, numbness. A year and a half and going strong. It is difficult to talk about MS without talking about those symptoms. Fatigue and cogfog were my worst symptoms by far.


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.
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dx dual jugular vein stenosis (CCSVI) 4/09
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