Thursday, September 30, 2010

How Can They Claim Ignorance of the Obvious?

The most often asked question concerning CCSVI other than the obvious medical ones is, “Why don’t the neurologists believe what is right in front of them?” It may be more accurate to ask why they won’t admit the truth they can’t help but see. Most of the doctors and intellectual notables from the governments and MS Societies who adamantly deny the possibility of a link between CCSVI and Multiple Sclerosis would appear to be acting illogically. To deny a few anecdotal internet stories and a video or two would be easily understandable. After all if this phenomenon is legitimate, it is the medical discovery of a lifetime. However after an extended period of time with mounting evidence which cannot easily be discarded fills the news, underground or mainstream there needs to be an alternative reasoning for their assertions. After searching in vain for some evidence of common sense among them, I have come to the conclusion that it is an exercise in futility. Anything said openly will be quickly analyzed by each one of us in an attempt to understand their stubborn posturing.

Even Dr. Freedman came out offensively when he lost patients, and adding insult to injury, their trust. Doctors are not accustomed to a debate or confrontation with their patients. He apparently received many unpleasant phone calls and letters. Others accused him of conspiracy with drug companies. There were patients who told him he was fired, and others who accused him of conspiring with drug companies to keep them ill in the name of profit. He was not a happy camper when he responded by saying, “What did we do — other than point out the obvious careful approach to treatment — to warrant this kind of aggressiveness from their part? What have we done to lose that trust? I think we have worked very hard to gain that trust through our meticulous research, our careful approach, our conservative and inquisitive nature, our demand for high standards.”

(Oh! Oh !Oh! I want to answer, pick me pick me!)

This statement gives us a little insight as to what they really want people to think. “Does the community really want this? Is that what all MS patients want? Because the overwhelming majority of patients I see are too afraid to say anything,” Freedman says. “It is a minority, but they are loud.” Again we are made to look as foolish agitators with perhaps no other purpose than to vent our frustration with having to endure life with MS. They have all known for a very long time that the disease modifying drugs we have been plied with and paid for with our health ,as well as money are of extremely limited value. There can be no justification for the out and out fraud of which we have become unwilling victims. How can they now be offended that our naiveté has been resolved? As angry or disappointed as we may be in the likes of Dr. Freedman, he is not as bold as some others. Dr. David Spence , the director of the stroke prevention and Atherosclerosis research center in London is accusing clinics providing the procedure of being thieves. He stated, that what they are doing is ,”robbery…it is quackery because nobody knows yet if it works.” Further, “The theory is implausible because it doesn’t bear any relationship to what we already know about these things,” he said. “Everything we know about MS so far indicates it is an inflammatory condition.”
This is the kicker: "You cannot study a new therapy without assigning a certain proportion of participants in a study to a control, a proper double-blinded control where the patient doesn’t know what treatment he or she is receiving and the person evaluating the response doesn’t know what treatment the patient is receiving."

Yesterday I had my regular doctor’s appointment. She is still coming to terms with what has happened to me. Even for those of us know clearly what the procedure can do, my improvements have been nothing short of miraculous, though certainly not more so than countless others. She has her own personal knowledge of me and my medical history in addition to all of my records, films and CD’s. I have been treated in the same area by the same clinics and hospital for the entire length of my MS history. She quite bluntly states that had she looked at my records and saw me as a new patient, she would not believe that they were the same person. I get that a lot. And that is why I don’t believe the claims of some of the doctors who maintain that they do not know that this is the real deal.

Finally CCSVI is being studied, perchance even in earnest. But look at the cost. The trail of cover up may be too muddied to ever know which individuals are to blame for burial of the venous connection which was more than a mere postulation over three decades ago. An entire generation could have been spared this disease. It is now generally agreed that CCSVI itself is congenital. There is credible speculation that many people lived and died without ever knowing they had MS. Evidence of the hereditary link should make all of us very concerned for our children and grandchildren. In the not too distant future the shadow of this disease will not follow over the heads of our posterity.

I am adding a this list with the added note that all of this is a part of my permanent record. My diagnosis for MS was determined by patient account, MRI, Evoked potentials, and lumbar puncture. The enormous cost to my insurance company prompted them to require a reevaluation some years ago for my ongoing treatment, medical assistive equipment and home health care. These are as valid as any of the studies that the opposition demands of us for proof that we are worth the effort and expense.

Clinically, my doctor can find only trace evidence of MS as of right now. The last two concerns, heat intolerance and residual numbness in my lower legs and feet have finally improved. Heat intolerance alone remains as a major concern. Thyroid and other tests have been done that will tell my doctor and I more in that area.

My MS Symptoms:

1.Diplopia: My first run in with double while driving and the car in front of me divided and multiplied itself times two. One was on the road, the other up in the air and to the left. I had to cover my left eye with my hand and drive for two hours to get to my daughter’s home, just in time to rush to the hospital to be her labor coach.
2. Optic neuritis
3. Tremors
4. Fatigue: This was not just a matter of tiredness or feeling the need for sleep. I’m talking crushing, fathomless, weariness, worn down, and mindless minimal consciousness. There were times when I literally could not lift my arms or keep my eyes open even after a full night’s sleep.
5. Severe cognitive dysfunction: ie; short term memory loss, inability to concentrate or focus, word fishing, changing intended thought mid sentence, stuttering, confusion, inability to comprehend or assess what was happening around me. I missed appointments , birthdays, commitments. One day I began talking about one of my friends to my husband and daughter wondering how she was doing. I had forgotten that she died six months earlier. I couldn’t type, write, or speak in a manner that anyone could understand for days some times.
6. Depression
7. Heat intolerance
8. MS hug
9. Weakness
10. Spasticity
11. Neurogenic bladder
12. Sexual dysfunction
13. Parathesias
14. Numbness and tingling
15. Loss of feeling in legs and feet
16. Raynoud’s syndrome
17. Severe pain
18. Incontrollable leg feet and hand twitching
19. Restless leg syndrome
20. LHermitte’s Sign
21. Dysphagia: swallowing problems requiring stim therapy
22. Low respiratory function,shortness of breath, coughing
23. Dysphonia
24. Neuralgia
25. Ataxia
26. Sensory Ataxia
27. Nystagmus
28. Extensor spasms
29. Dysmetria
30. Aquesia
Thankfully, I did not have to deal with all of these, all the time. However some ran the entire course of my disease.
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