Ok. I guess it's time to rant. First off, I will start with a question. What was found that led your neurologist to your eventual diagnosis of MS (for example MRI, observations, spinal tap, etc.)?
Myself, it was merely an MRI following a bout of optic neuritis. No spinal tap necessary. At the time of my diagnosis, (in 2007 once my optic neuritis was cleared up with some oral steroids), the MRI was really the only piece of static information that indicated anything. My walking, movement, swallowing, every aspect of "normal" activity was intact. I couldn't say that now as I can no longer walk, have trouble swallowing, breathing (at times) and talking. I'm sure there are other symptoms I could attribute to MS that aren't mentioned here.
All of this has driven me to research to find out all I can about MS. This is what brought me to the eventual discovery of Paolo Zamboni's theory of chronic cerebrospinal venous insufficiency (CCSVI see http://tinyurl.com/llzrj9l or my blog http://ccsviblog.com).
In 2010, I had what was called the "liberation treatment" preformed on me with no success. Does this mean I do not believe in the CCSVI theory? No, not at all. For one thing, I found out that I indeed had problems with stenosis in both my left and right jugular veins. My azygos vein also had problems. All these conditions were a text book matchup to all things CCSVI. My IR (interventional radiologist) was able to "fix" my azygos vein through stenting (something I was not enthused about) and preformed an angioplasty to my right jugular vein which was totally stenosed. My left jugular was so "diseased" (as he described it) that there was nothing that could be done.
I have found that so many of these theories are slowly dismissed when not resulting in a 100% positive outcome. A lot of individuals had very poitive results with the liberation treatment, some (like me) have not. I think the key is to focus on why. Remember, this is all a theory. Even Zamboni himself said that this was a theory that needed research. With this, I think that any neurological disorder that has no documented cure as of yet (Multiple Sclerosis, Chronic Lyme Disease, Chronic Fatigue Syndrome, Parkinson’s Disease, Autism and Amyotrophic Lateral Sclerosis (ALS)) are open to be discussed, and no theory dismissed - especially by anyone who has become stricken with any of these.
My theory is that MS is nothing more than a disorder that was identified at one time, and anyone who has symptoms that match are diagnosed with any of the above mentioned disorders. MS is just a disease that falls somewhere within this list.
This is my rant. I apologize to anyone who may have been offended. My left arm is beginning to shut down now, so time to stop typing,
Sunday, August 25, 2013
Thursday, August 22, 2013
Wednesday, August 21, 2013
Monday, August 19, 2013
Saturday, April 13, 2013
I just recently signed up for a new web site that seems to be devoted to people with MS, like me called: http://www.mymsteam.com. I think it will be nice to discuss, compare and contrast MS issues with others. Maybe this will encourage me to continue blogging on this site and learn a bit more about CCSVI. I have recently read about and am interested in stem-cell transplant and what its impact will be on MS.