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    • #11458
      Michael Morale
      Keymaster

      A question was asked regarding whether or not we have undergone a muscle biopsy due to our disease. While I don’t have Muscular Dystrophy, I do have Spinal Muscular Atrophy. SMA is a neuromuscular disease and is in the Muscular Dystrophy family of neuromuscular diseases. In 1966, my parents took me to a neurologist because I was not meeting some of the milestones that a child my age was supposed to be meeting. After a brief five minute consultation with my parents, the doctor told my parents that I had Muscular Dystrophy, and to take me home and enjoy what life I had left. To make things even worse, as the doctor walked out the door, he turned to my parents and told them to go ahead and start planning my funeral as well. In 1968, my parents noticed that I was getting a little stronger and they began questioning the neurologist’s diagnosis. When they took me back to the doctor, they told my parents that I may not have Muscular Dystrophy, but they would have to wait until I was 5 years old so that they could do a muscle biopsy to better determine the proper diagnosis.

       

      In 1970, after turning 5, my parents admitted me into the hospital so doctors could perform the muscle biopsy. After doctors took this biopsy, they sent this biopsy to the lab. Two weeks later, my parents received a phone call from the neurologist and he told them that my muscle biopsy had been lost in transit, and that they needed my parents to readmit me back into the hospital so that they could take another biopsy. At this point, both of my parents told the neurologist that under no circumstance were they going to put me through that procedure again. My parents later explained to me, after I was older and was able to understand what was happening, that they felt that the muscle biopsy had been lost in transit on purpose. Back in the late 60’s and early 70’s, doctors were trying to protect each other from a malpractice lawsuit. There was a question as to whether or not the doctor that delivered me did something wrong during the delivery process, and the doctor that delivered me was one of the associates that worked with the neurologist that took the muscle biopsy. My parents told me that the neurologist was probably trying to protect his associate from a malpractice lawsuit and that the reason why my parents didn’t want to do another muscle biopsy was because the first one was an extremely painful ordeal for me and that they did not want me to have to go through that again.

      I’m sure that things are much better today than they were back in the 60’s and 70’s, and I know that with the advancements that have been made in medical technology and surgical techniques, this procedure is not near as traumatic as it used to be.

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