When a person is diagnosed with cancer, they immediately look to their doctors for salvation. The same is true of any devastating illness. One of the reasons for that choice is sheer panic and ignorance, simply put a lack of knowledge. It is natural to grasp for a floatation device when you are drowning. The last thing I wanted to do when diagnosed with MS was to wade through a sea of treatment options and opinions of others. So like most of us, I chose the path of least resistance: blindly follow the demands of my neurologist. I took the IV Solumedral not realizing that it would one day almost destroy my pancreas, cause reactive hypoglycemia and osteoporosis. I have the broken bones to show for it. I took Avonex even though I had flu-like symptoms from one injection to the next. When I couldn't handle being sick any longer I took Copaxone. After nine months I threw the left over medications in the trash. Say what you will about the cost of angioplasty. $36,000 to $42,000 for a years' worth of disease modifying drugs is an exorbitant price to pay. The evidence of their efficacy is questioned by all sides of this argument.
Angioplasty for CCSVI has gotten a bad rap from both sides of the issue. Some who had little or no improvement have found it easier to dismiss the entire theory out of frustration, anger or even jealousy. Some have shared this with me openly. Much like the story of the fox and the grapes, they decided that since they could not obtain the desired results that it was all a hoax , just as the fox decided that since he could not reach the grapes, they were probably sour anyway. I might have easily been one of those if the same thing had happened to me…but it didn’t so I guess we’ll never know.
I have seen the frustration of people I have met who figuratively ‘bet the farm’ on this procedure to restore a better quality of life to them and their families. Is it possible that this is not for everyone with MS? At this point in time: Maybe.. Are their other options: of course… Were our neurologists right all along: not on your life. You may say that it is easy for me to sing the praises of the venous connection to our condition but you would be wrong. There are many factors to consider when pursuing the best course for symptom relief.It’s important to remember that symptom relief is all that is possible if the underlying cause is not addressed. You can take all of the supplements and vasodilators in the world, but they will not correct venous anomalies.
Regardless of personal opinions, the evidence is overwhelming that drug companies and MS Societies have lied and misrepresented themselves for decades. Neurologists have been compliant at best because they thought what they knew was correct. At worse they have allowed their narcissism and avarice overshadow their ethics and morals. In this regard I think some justice is in order, but not pertinent to this note.
MS/CCSVI is a multi-faceted condition with many possible causal factors. It requires a multi-faceted, possibly exhaustive approach to successful treatment. Diet, supplements, deficiencies, environment, etc. are part of the picture. New puzzle pieces are sliding into view. Dysautonomia is one of those. Google it if you want some insight.
It’s not fair that everyone does not have CCSVI treatment options that would promise them more. The cold truth is that the doctors who really know what they are doing are few. Supply is grossly overshadowed by demand. Comprehensive before and after care is scant. Be angry that this is our reality, I am. Shout to the rooftops about the disparity. Better yet, write to your governments and healthcare service providers. Go on a hunger strike. Orchestrate a demonstration or pitch a tent on the White House lawn. Don’t arbitrarily discount the only viable treatment we have because it’s something held back from you for the time being. The anger and disappointment is misdirected. You can demand that you be given proper treatment or jump right back into your neuros’ arms. It’s your choice but don’t fall into character with the pissed off fox.