This Is MS Multiple Sclerosis Knowledge & Support Community

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.

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

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.

newlywed4ever wrote:And I will always remember the day before ever hearing about CCSVI.

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.

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.

jillMEnz wrote:Hi,

Where was the before after video?.

Would love to know your b4 and after story too cece

thnx Jill

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.

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

• 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.

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.