Thanks for the idea. It sounds like a really good one to me. I've pieced together, at various times on my own, some snippets of this and that that I've found on different threads as well as from the sticky’s, and I use those when talking to my Chiro, family & friends, etc.
I'm out of my state, traveling in our motorhome, so haven't approached my neuro or GP, but I know one of my fellow Montana MS patients is, or has already advised her GP (We have this GP in common.
) of CCSVI and Dr. Dake’s upcoming trial.
But I’d sure like one well written and concise "Introduction to CCSVI and Diagnosis" to have at my disposal. Maybe even also a shortened version I can put on a flashcard and carry in my pocket or purse.
You know how some of us have trouble remembering the name of a person we've just been introduced to. You know what I mean, you’re standing there looking them straight in the eyes, having a conversation, and even though just seconds ago you were introduced, for the life of you, you can’t pull that name back out of the deep black abyss it fell into!
Well, that’s how I feel when talking about CCSVI at times. A person will say, what is CCSVI again, and I mumble something about stenosed veins, iron accumulation and angioplasty and for the life of me, I can’t even correctly tell them what the initials CCSVI stand for……….I can‘t pull it out of the abyss anymore than I could that forgotten name, and then I’m standing or sitting there feeling totally defeated, ineffective and more confused than the person who is trying to follow my illogical description.
But if I had my “cliff notes” handy, it would sure help.
I have written to media about CCSVI and that is much easier for me, cause I’m not face to face and can look all over for what I need when writing on the computer. But I hate referring to other articles and attaching lengthy links as I’m afraid that they may or may not really be reading my letter, and will probably not even be opening the links.
So a cohesive, accurate statement, written as a concise "Introduction to CCSVI and Diagnosis", would be awesome! And I like the idea also that it be suitable for various elements of a social media campaign so that everyone can use it.