Sunday, October 3, 2010

They Get It, They Just Don't Want It!

Sometimes I’m better off not asking a question that will likely be a fabrication or partial truth that sets my head spinning. After annoying a few doctors for the better part of six months, I landed an interview. My questions are fairly straight forward. We tip toe around the reasons for the behavior of the MS societies and doctors adamantly opposed to allowing people like us have our veins checked for blockages and /or abnormalities. Money would seem the biggest obstacle in their way. Now I believe that while it is a driving factor, it lags behind the most ominous one; ego. It brings me no satisfaction to say that or even ponder what it means. I arrived five minutes early, for appearances only. Dr. Kimm looked down his nose like he should have been wearing glasses. Dr’s Denton and Heiser were busy talking to each other. They must have heard my teeth chattering because it instantly became silent. I had my laptop and notebooks stuffed in a too small briefcase. Dr. Heiser took one look at it and said he did not want to suffer through some sort of presentation. I promised him that I would keep my questions short and thanked them for their time. (All ten minutes allotted for it!)

I asked them what they knew about CCSVI and the angioplasty procedure to correct the problems associated with it. Dr. Kimm said that he is always prepared to hear about cures or treatments for Multiple Sclerosis because he has dealt with them all during his career. This new theory would die out in time when the studies are completed. “If it goes that far.” I decided quickly that these were “unfriendlies”. Basically the summary of Dr. Heiser was blunt and to the point. This Italian doctor is not a neurologist and wasn’t even a practicing doctor at the time of his discovery. There is no reason whatsoever to entertain the notion that twisted veins has anything to do with Multiple Sclerosis. There are effective treatments for MS and the desire of a few disabled people to want a complete cure was unrealistic given the nature of the disease. At this point I asked him which treatments he was referring to. In his opinion, Avonex and Tsybari show the most promise. He said that Avonex slows the progression of the disease and the development of new lesions. There went five of my ten minutes. He said that most of his patients did well on Avonex. I told him about my experience with Avonex and he said he couldn’t speculate about that because he has never seen me as a patient or my records. Dr. Kimm said that if what I was telling them was true, that it was not a normal experience with any of the DMD’s. I took out my manila folder and handed them to Dr. Denton. He was the only one not saying anything so far. He sat down with my records while the other two rolled their eyes. Dr. Kimm asked me how long I had MS and what therapy I had in the past. I told him between 15 and 17 years and I had used Avonex for nine months and copaxone for one month. I obviously was not doing badly to have had it for that long. I told them I was secondary progressive. Dr. Denton broke in and said,” These are your records and you have had this treatment?” I told him yes they were and yes I did, twice. My minutes were up, but Dr. Denton started to ask me questions. It didn’t take me long to realized that his questions were intended to prove or disprove the ownership of the medical records. For the next fifteen minutes I explained the Reader’s Digest version of everything I knew about CCSVI, the procedure and my experience. Dr. Kimm reached for my records but Dr. Denton picked them back up and continued reading. Instead of getting the records he told me all about the placebo effect and how the mind is powerful and adaptive.

It was obvious that I was going nowhere quickly so I asked the one question I really wanted an answer to.”You have my records, you can see that I am not in a wheelchair and have no balance problems. The MS symptoms causing me the most distress were cognition issues, extreme daily fatigue and the need for so much assistive equipment. Knowing that I am no longer disabled to that point how can you say that the angioplasty procedure only produced a placebo like effect?” Dr. Kimm began a dissertation on the need for clinical trials. Dr. Heiser stood up and said that it was all very interesting but they were running overtime. He and Dr. Kimm got up and walked out of the room. Dr. Denton said, “These are obviously your medical records. I cannot explain the remission you are in, but I cannot believe that you have been free of all these symptoms for four months. If this theory was true, it would mean that our combined years of study and research was based on a totally different concept. You will make many enemies pursuing this course, but you know that. Did you expect to come here to impress us and tell us we don’t know our jobs? I took my records back and said, ”No, I had no intentions of impressing any of you. Thank you for your time.”
Needless to say, I won’t be trying that tactic again anytime soon.
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