This Is MS Multiple Sclerosis Community: Knowledge & Support

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.

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
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.

Thanks, Robert, I agree.

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 .....

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



MrSuccess

thanks MrSuccess

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.

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.

i always like to hear good news

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

Great quote Cece!

I am a few days shy of my 2 year anniversary of my CCSVI treatment. Hard to believe it's been that long.

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!!

Cece, CONGRATS on reaching this milestone!

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

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!!