Tuesday, January 11, 2011

Unity in suffering?

In my alter cyber land of the facebook I have joined a group of people on the National Multiple Sclerosis Site page. People ask questions, post about symptoms talk about treatments and the normal sort of deal. And then there is this....

There is a treatment option that is surgical, essentially angioplasty known as CCVSI..

Wiki says..

Chronic cerebro-spinal venous insufficiency (CCSVI) is a term used to describe compromised flow of blood in the veins draining the central nervous system. It has been hypothesized to play a role in the cause of multiple sclerosis (MS).[1][2] This hypothesis was first put forth by Paolo Zamboni in 2008.[3][4] An endovascular intervention for the syndrome has been attempted however further research is required to determine if the benefits outweigh the risks of the procedure.

The hypothesis and procedure has generated optimism among people with MS but received skepticism from the majority of the medical community as the procedure may lead to serious complications while its benefits have not been proven.[5][6] In addition concern has been raised with Zamboni's research as it was neither blinded nor controlled[5] and further studies in 2010 had variable results.[7][8] This has raised serious objections to the hypothesis of CCSVI originating multiple sclerosis.[9] Additional research efforts investigating the CCSVI hypothesis are underway.

I have met a few people lucky enough to have had the "liberation" proceedure and they're lives have been drastically changed. Many for the better, one with complications of clots. There are miracle stories happening here. I hope that one day it will become a mainstream option.

Meanwhile there is the controversy... OMG the controversy. On facebook as you collect a group of people most of which do not work, are kinda bored and maybe weird and you get some wingnuts. There are literally people whos mission seems to be to bash anyone who's had the proceedure and who are so "anti" they want it banned. I have watched grown adults bicker and fight and literally tongue lash one another until I am saddened and a bit nauseus. I can only guess that they literally have nothing better to do. Then you add in the advocates and the fights and words and accusations swirl.

It would be entertaining if it was not so dad gum sad. Everyone wants freedom from the toxic environment from which our bodies are caught! Making the environment around them toxic is a choice. Not much else I can say than mean people suck!


Anonymous said...

Maybe if we could run fast enough, so fast that MS could not catch up to us, Life would be fine

Or, maybe if we cried so hard our tears would wash away all of our symptoms and lesions.

Maybe if we yelled out in our anger and pain so loud it would scare the MS out of our bodies.

Or, maybe if we just loved and supported one another so much, we could change the outcome for future generations, and Lesions would be a thing of the past.

God shine down on us all as we go through lifes trials and tribulations. To all of those I like God Bless you. To all of you I don't like God please move me to your love so I can see the error of my ways

Just Commenting
Jay Skinner

jojo said...

That was so sweet and kind Jay! I just blocked a bunch of people so I didn't have to hear the drama... we all have enough allready!