Wednesday, September 7, 2011

Revolution? Patients in Charge…

Revolution? Patients in Charge
I was talking with a friend with autoimmune liver disease the other day, agreeing that we have to be our own diagnosticians and researchers and keep up with the information in our field, We both keep connected to others with our own disease and think it is mandatory to just be in charge in general.                                                                                                                                 
The subject of the resistance of some doctors when it comes to this concept came up and I mentioned that "of course, now the patients are in revolt and that's all about to end."  To my surprise, she really wasn't aware of what has been happening in the MS world in this regard.                                                                                                                                                                
When the CCSVI information came to light, (that's Chronic Cerebrospinal Venous Insufficiency)  all kinds of patients looking for access to screening and treatment started posting and trading information about which docs were doing what and where. The Canadians have lead the way on this and I admire and just plain love the energy they have spread all over the globe as a side effect from the battles they must wage for access to treatment.                                                                                                                                

How many CCSVI blogs are there anyway?  I've picked my few favorites because I can't keep up with them all. Have a question?  I can put it out there in any number of places and have an answer in a few hours, usually from a patient or caregiver and sometimes from a physician.  

We often have the new information before the doctors do. It is posted on various websites and blogs within a few hours of its becoming known. Many who write blogs specifically to keep the community up on the events are quite aware of the symposiums and papers that are about to arrive well before the due date, and are waiting to "grab" the information and get it posted.                                                                                                                   
I sometimes watch long videos uploaded by a blogger who has MP3d an entire two day symposium and spent hours editing and uploading it for the rest of us. I usually get some new information and I always "get" the camaraderie between the pioneer patients and the pioneer physicians.  It is clear that, pesky though we may be, they care about us and consider us partners in the effort to nail down what will be effective treatment for MS.                                                                                                                                                       
It isn't just CCSVI; I also read about nutrition from Swank to Paleo, about new Lyme's Disease tests and treatments, about exercise, about drugs in trial and new releases. Sure, you run into a few kooks but I don't act on anything immediately anyway. I often read and follow for months, even a year, before I decide to try something new.                                                                                                                                                                                                                                                                                                                                                                   
Those of us with so-called autoimmune illnesses are far more apt to read, ask questions and challenge the conventional wisdom than those with better-understood maladies. We have to; otherwise it feels as if we are swinging out there on a vine by ourselves.                                                                                                                                                                                                   Early on I walked out of my neurologist's office forever on the day she told me that diet had absolutely nothing to do with MS.  She had never heard of Dr. Swank or any of his successors. She also assured me that I was Norwegian and that was a major risk factor for MS.  When I protested that I knew every ancestor back to 1650 and that none at all were Nordic, she told me I just didn't know it, but I had a Norwegian relative back there somewhere. 

You can imagine how entertaining it was at the time, though of course it was not a good strategy to take with this particular patient. I have continued to draw my own conclusions ever since and it was the best thing she could have done to prepare me for MS.                                                                                                                                                                   
I like feeling good about what I've discovered and decided. I like being connected to an infinite amount of information, however mind-boggling it may be on some days.  Who would have thought the insanely absurd would have such a profoundly liberating effect, but then, laughter has always been highly rated with me.   

If being radicalized is what it takes to make changes to patient access to information and treatment, then so be it!

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