CCSVI summary from
direct-ms.org. I believe that the "second camp" (researchers, neurologists, big charities) is slightly mis-characterized by the tone of "living off MS" though I've been known to take things out of context. Living off MS seems so unpersonal. I know of several researchers out there working to find a cure because they care about people living (or passed away) with MS. There are many neurologists who have MS - namely William, featured in the MS Awareness Week 2010 public service announcements. And the National MS Society's vision is a world free of multiple sclerosis... which is why I'm here working to end a disease that ravaged my family and stole my mother's life. A cure now won't help her but will prevent other families from going through what mine did. I guess I don't see that as "living off MS" but as passionate drive.
Without even reading your entire post, (which I will do in a moment, I wanted to reply to you and get in touch.
ReplyDeleteI believe I am in such a "catch 22."
Asked Neuro in January about CCSVI. She had "never heard of it."
After reading a little of the email on my phone she agreed to send me for a CT Scan of my neck.
She said she "and the Radiologist were dumb founded... It was there. A narrowing in my jugular vein.
She ordered a blood test which showed a high mark for some rare clotting disorder and referred me to a hematologist.
I almost dropped when their answering machine answered "University Cancer Institute." The other POSSIBLE she gave me answered "Hematology and Oncology."
Upon making my appointment, I was advised, "the markers that were high were from an obscure blood disease" and that the test, being unreliable needed to be repeated in 90 days to make certain.
Relieved that it was not an Oncological situation, I saw her today.
I prefaced that I had grave concern that between my back, my teeth, my lungs and other malfunctioning body parts AND the fact that information was coming in at light speeds, I needed to make certain she was "on top of it." She assured me she was, but that we needed to wait for "studies to be done. Four or five years probably.
WELL, I don't have a warm fuzzy feeling.
I am pretty certain, she is squarely IN that second camp you refer to. She was not even anxious for me to pursue a vascular guy.
Of course I am trying to get to a vascular guy. Seems it is time to begin advocating.
So far, The guy she referred me to won't take Medicare/Medicaid. So I WILL be carrying on, but man, I am sure interested in this topic. My M.S. has been good to me... HAHAHAHA like that is possible--- But if it decides to bite I could be in a very bad place, very fast...
So I will be watching this. I will probably cross post something similar to ASMS.
I KNOW the good folks who give me $10,000 in medicine every quarter... Those same folks who feed my Doctors office staff several times a month with 20 ft sandwiches, etc, must be very panicked.
Thanks,
I choose to laugh too... (MOST OF THE TIME.) :-)
PS if any of those researchers are in S Florida, PLEASE let me know.
Thanks again