JimmyLegs... you, I think, are one of my heroes. You are one of the family elders of this forum, are you not? What a great way to get all of the information out about CCVSI. I have been absoluely INTRIGUED. For a long, long, LONG list of reasons.
Karazhan, I am actually doing fine. I have had two children in 4 years, due to my age, not my MS (I know there are people out there that get pregnant to alleviate symptoms, which seems like it would be a LOT of work.). I'm 40 this summer, I was diagnosed in 1997. So wow, I guess I've had MS for 13 years. MS has shaped me on every level of my life, but physically I'm doing better than many.
So much of this disease has bothered me. I'm not talking only about the physical, which has ranged from losing my vision in one eye (I have it back), to numbness, to fatigue, vertigo, etc. etc. etc. I have been on Avnoex and was on Rebif (hated the latter, had HORRIBLE injection site reactions, long horrible story), and Tysabri right before it got recalled. I will one day write a story about my MS and how marginalized I have always felt. How I have grown up with it, wondering how on earth they can continue to promise a treatment, fail, promise a treatment, fail, promise a cure, FAIL, etc. etc. etc. Its amazing.
When I found out about CCSVI it was like someone put a huge piece in the middle of the puzzle. It fits EVERYTHING. What happens during pregnancy? Increased blood flow. What happens during breast feeding? Same thing. why do people say bee stings work? The body reacts by increasing blood flow. What about nutrition? Exercise? Cardiovascular health. I was in a daze for days I was so happy. Strangely, you know what? My family members aren't as thrilled about this as I am (even though they are typically the ones sending me articles about different things). I think they don't want to get their hopes up only to have them dashed again (like tysabri.) But ultimately, even if CCVSI falls apart, well, for the first time, people with MS are standing up and telling the world that we want more than just a promise. We want to know what is happening. How liberating!
I sent a letter to CBS news because I think they should know that this movement is going on. We are telling neurologists, the NMSS, researchers, and everyone involved in our treatment that we have a right to know whats going on with our lives. It feels GOOD!!
Glad to be here!