I've been meaning to say this for a long time: just what is 'Healthy' anyway?
The fact that CCSVI has been found in 'healthy' controls, as well as those of us with CCSVI and MS, does not, to me anyhow, mean much because 'health' is a relative term (I am aware that what I am saying is contrary to the mainstream medical point of view). And who knows that those with CCSVI are not suffering from some other form of ill-health, not yet totally manifested? On my first round, 12 yrs ago, trying to see what was up with my body because I was having symptoms the neurologist looked at me, did a few knee-jerk tests, even took an MRI, in which there was no evidence of lesions and told me to go home, that I was 'perfectly healthy'. And yet I KNEW there was a problem in my body, because, gee, I am having strange sensations doc, and what is going on? But I was tan, lean, 'in shape' as they say somewhere in gym land, and running six miles a day, running a restaurant (killing myself, frankly) etc, etc. So I was 'healthy' and yet I knew I was not, that something was off balance.
Good thing I went for a second opinion, doc.
Since CCSVI is being newly researched, we have no idea what else, what other 'illnesses' are involved. The trials so far, as far as I can tell, are on the POSSIBLE relationship to MS, and this does not necessarily exclude the POSSIBLE relation it MAY or may not have to other disease and discomforts....DIS-EASE, the word comes from somewhere, whether one has a diagnosis or not. How many are dis-eased in their bodies and are just simply ignoring it thinking that's just the way life is.
I have met too many people in my life who are VERY out of touch with their bodies, the body being something most take for granted, like the new car running smoothly until it breaks down, and even then, many do not stop and pay attention. Hardly does one take preventative measures in 'health' until something happens.
Who thinks of death until faced with it??
I am one of the healthiest people I know, in fact healthier than the so-called 'normal' people, or those without diagnosed 'illness'; and yet I have MS (in fact those of us on this forum seem the most in touch with their bodies!). How many undiagnosed illnesses are there out there? And it seems really obvious to me that people who are so-called 'healthy' are not healthy: weak immune systems, organ disturbances, gut malfunctions (bad breath is not just because someone did not brush their teeth) obesity, etc, etc, etc. So who is 'healthy'?
When I am out an about and interact with the human race, I see fatigue, skin issues, obesity, and just because someone may walk a little faster than me, does not mean they are 'healthy'.
And how do we know or don't know that those with CCSVI that are NOT diagnosed with MS don't have other serious health problems that they are not even aware of, because the average person is usually unaware of health issues in their bodies until there is a catastrophe, or full blown symptoms, like with MS. I mean, Fibromyalgia now has a name, so too with Chronic Fatigue, so now what? now that there is a name for it, it is 'real'? When those suffering from symptoms have known for years something was not right?
I am so tired of the word 'scientific' being the end all for 'proof'. WE ARE THE PROOF and all the stories are so important because without them, frankly, there would be no NEED for science! I wanted to see a doctor recently and made the appointment, but then the secretary told me 'oh, just a head's up, don't ask him where he went to school, he doesn't like being asked that." WHAT??????? I said 'So I can't ask him any questions about himself?" She told me he is the doctor and feels when he treats the patient that he is the one asking the questions! (That's over here in Santa Fe, NM where the enlightened people supposedly live).
I canceled the appointment.
This paradigm must be shifted (which is why we are making history with Dr. Sclafani's thread and the other incredible doctors who have entered in a dialogue with us on this forum) and those of us with MS are helping to shift it. This does not mean lack of respect for science and those who have spent a lifetime researching and studying, it means we need to be in a dialogue, as mature, intelligent adults, not in a parent/child paradigm where we are simply 'told' what to do to etc, but one in which we, as patient, as the one with the issues happening in OUR bodies, are viewed as the one who KNOWS a bit about what's going on, and just because we have no name for our pain, does not mean we are without insight, knowledge and intelligence. (An excellent book on this is Elaine Scarry's 'The Body in Pain' where she takes some of these issues all the way to global torture).
Okay, let me see if I have anything else to add.. So, I guess not, on this sunny Sunday morning where they weren't kidding when they said over 300 days of sunshine a year.
Sorry if I repeated myself a few times up there...