Part Deux: They Know It,They Just Don't Want It.

Part Deux : They Know They Know It, They Just Don’t Want It.

One of my daughters and my sister are nurses. Our collective opinion is that the average GP has a better sense of humility than many specialists. It would be impossible for one human being to know all there is about practicing medicine. Specialties are an important part of health care. I think if a GP makes a mistake, we all allow that it is impossible to be perfect. When a specialist is unwilling to admit that part of his or her training was based on wrong assumptions, they renege on their oath to first do no harm. If the angioplasty procedure was a brand new treatment with no research to fall back on, this might be understandable. To deny this treatment after refusing to even explore the basis for it is unconscionable. I mentioned a woman who died from MS complications. I plan to write about her soon. She died last week with her name on the schedule to have her procedure in February. She could have had it done in June if not for her neurologist's refusal to write the scripts for her. The neurologist said, "She would have died anyway if the procedure was still unknown at this time. I stared at him and said, "Yes, and I would have died 20 years ago if not for the advances in cardiac care. What does that have to do with anything?" The only thing he could say was," It wasn't her doctors’ fault that your studies ( ??? MY studies!) were not complete. Everyone needs to wait until proper medical protocol has been followed. Doctors are not to blame for diseases like Multiple Sclerosis. We save lives every day." I said, "Nobody saved hers' and she wasn't as ill as I had been. She was 36 years old, left a husband, an 8 year old son and an 18 month old baby girl. Would you tell her husband what you said to me?" He did not even look at me or say a word.

I haven't slept much since that meeting. We see less than stellar treatment of people everyday out in public or maybe on the internet. Some people want to get along with each other, some don’t. But nobody can explain to my satisfaction how professionals who dedicate their lives to the art of healing, can so easily forget why they became doctors in the first place. I have to believe that there was a time when they did look at their patients as people rather than statistics or case numbers. Perhaps they became desensitized by the constant suffering they see. That begs the question, if they know there is a chance that the quality of life for people who have a lifelong progressive disease is available, why are they so opposed to its application? To practice medicine is an honorable profession. That they make better than average salaries should not concern us. We all care about our jobs and reputation. Every individual needs to know that they are productive and useful. How would helping us take any of that away from them? It would seem to take an enormous amount of dedication to become a doctor, any brand. They deserve fair compensation for their efforts, but no more so than any other honest career or job. Those who have a direct influence on the well being of other people have a greater obligation to serve fairly and equitably. Your ability to have the angioplasty procedure for CCSVI should not be a matter of who you know. I don’t deserve to be symptom free or have a good degree of symptom relief than anyone else. Where did they get that power? None of them would know you or me if they ran over us in the street. One of the objections to allowing PwMS to have this treatment is that they expect their doctor’s to give them the best care. Since no one can promise that to their satisfaction, one specialty in medicine and a handful of MS support groups feel they have the right to determine our health care and therefore our fate.

We have tried to live within the boundaries the government has set. We bent over backward to comply with their definition of “fair “ clinical trials and studies. We have signed petitions, written thousands of letters, phone calls and other communications to explain and inform. We have been reduced to spying, passing secret information, telling half truths and begging, yet they offer no reasonable excuse for their actions. Did they take Tsybari off the shelves when we weren’t looking? Are they revisiting their stand on steroids and mediocre at best DMD’s? Soon it won’t matter what is wrong with you, just don’t tell them you have MS. It is ironic that neurologists even have a say in this matter at all. If I have a problem with my kidneys I don’t go to a proctologist. Why should any neurologist control who treats my blocked veins? That the MS societies have a foot in the door is beyond me.