My little rant for today.
I work about 6 blocks from the Whitehouse, I've lived in DC metro my whole life. But I've never protested anything. Some where inside I've always wondered that it would be neat to go and protest on the mall. I've never felt an issue enough to protest.
While we don't have a march in mind, I feel very strongly about the state of MS treatment, I would stomp around the mall and rabblerouse for this cause. Though, I don’t thing this is where we want to go. While I don't believe we are deliberately deceived, I also don't believe we get anything close to full disclosure. Somewhere in that vast grey area is how I see the state of "modern neurology".
So where do we start? Sarah knows it took a good amount of head banging to get over my skepticism. I’m not really ready to start spreading the word until Kim and I see some results in her disability. Then, even if I help folks discover the way of CPn, it’s so frustratingly hard to find a doctor. How can we get this message out?
Death is number 10 on the EDSS, it’s not like it’s hidden. It’s pretty darn clearly stated in a most frighteningly clear way. But, yes, neurologists don’t tell folks about this. But then again, I don’t know that I would if I were a neuro either. It’s not really where I’d encourage a patient to be. Please don’t jump on me yet. All I’m trying to say is …….. back up – I coach my son’s baseball and basketball teams. We have limited time, about 2 hours a week to practice. In those few precious hours, I want to get the most benefit into the kids as possible. I want them to leave practice ready and fired up for the next game. As a coach I’m all about encouragement, mentoring and directing the mind toward an attitude of positive strength. There is no positive result to be obtained from telling a kid the negatives.
So all I’m getting at is that I’d want my neurologist to be hopeful, positive and encouraging. I’d want to leave his office feeling empowered with a reason to fight. If I were a neurologist, I’d likely not tell folks that MS can kill you. That’s my perspective and my reasoning. With this limited, tiny slice of “modern neurology”, I’m ok with it.
But, the inability to have openness for other ideas besides autoimmunity is frustratingly dumbfounding. The field has been chasing around autoimmunity for DECADES. I know because as you can well imagine I have STACKS of articles on my desk of stuff I’ve printed up and read from lots of medical journals. Stuff about B cells, T cells, Dendritic cells, NF-KB, Cytokines, and just about every other MS doctor word you can think of. I own my own copy of McAlpine’s MS 2006. I have more MS paperwork on my desk here at work than I do my actual accounting work.
Hey, maybe, just maybe it’s a bug.
So I’m all over taking MS away from the neurologists and giving it to someone else like immunologists or even dentists. I’m not opposed to the part about wanting the give the patient a good mental sense of hope, but I’m down right opposed to unwillingness to think. Now, I do understand that the insurance companies are the folks who did this to us. I fully comprehend that doctor developed science can’t be applied by doctors, until some insurance person who knows nothing about medicine has agreed that applying the knowledge won’t cut into next year’s raise. I also understand that doctors like the free Avonex pens and Rebif notepads they get, without which it would be nearly impossible to run a medical practice. I understand that David didn’t kill Goliath with his bare hands.
1) Lobby Oprah to have Sarah on as a guest.
2) Develop a pamphlet to hand out at MS events.
3) Get a super famous person with MS on the protocol.
So that’s my rant for today. If it didn’t feel like a rant find a Lewis Black video on the internet (homeland security is a good one) and then reread this post in a ranting way.
Have a Great Weekend, I’m gonna play in the snow!!! Ken