- Horace Walpole
My journey through CCSVI self-education, diagnosis, and treatment has been one of the most remarkable experiences of my life, whether or not I ever see any benefit from it.
So with all that I have learned and all that I have now experienced, what is my position on the CCSVI – MS connection? From a purely scientific point of view, nothing is yet proven. We have pilot studies. We have anecdotal evidence. We have well thought out theories. We have incredible enthusiasm among patients and some doctors. We have trials in progress (not enough, mind you). We simply don’t have irrefutable, scientific proof of the nature of the connection yet, especially for the relatively rare primary progressive MS (my type).
I do have a scientific background, and that part of me will not be satisfied until much more data is independently collected and analyzed. But I am also an MS patient and an MS advocate. This side of me does not demand the same burden of proof as my scientific side does. The good news is that I don’t have to choose a single perspective. I can honor them both.
I am personally convinced that to some extent CCSVI contributes to or even causes MS, although I can’t prove it. I don't know how robust that relationship is, but I feel that there is something profound going on here. Again, I am less informed and therefore less confident about the relationship between CCSVI and primary progressive MS than I am about the relationship between CCSVI and the more common relapsing remitting MS.
Given this, what do I believe should happen next? I'm glad you asked.
I believe that every person on the planet with clinically definite multiple sclerosis should be tested for CCSVI. Unfortunately, I'm not exactly sure what I mean by “tested.” Relying on the run-of-the-mill MRV and ultrasound examinations isn't the answer. There are only a few clinics in the world that are proficient at using these noninvasive tests to diagnose CCSVI. That is not a reason to stop using these tests, but rather a reason to become better at using them- through practice. The gold standard is the catheter venogram, and even that needs to be performed by an interventional radiologist who has some level of competency or at least genuine interest in CCSVI. Every MS patient deserves to know if the veins that drain their central nervous system are functioning properly, and they deserve to know that now.
CONTINUE reading from Mitch's Blog "Enjoying the Ride"
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Remain up-to-date and Informed with Multiple Sclerosis News and Information. If not yet receiving the "Stu's Views and MS Related News", weekly M.S. e-newsletter, then please take 20 seconds to register at: http://www.msviewsandnews.org. - - Thank you -
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
0 comments:
Post a Comment