The Road to Discovery Part 3 of 4

16 Aug

Fast forward 18 months or so to September 2012–I had been taking the thyroid supplement faithfully and while I had experienced a slight improvement in energy and strength, my creatine kinase levels were still at least ten times higher than normal (which is an indicator of muscle stress or breakdown.) The neurologist I was seeing then told me that even though the thyroid issue seemed to contribute to my struggle some, it was obviously not the root cause of the muscle weakness. He then referred me to a neuromuscular specialist; a month later I was in his office.

By this time I was also developing some other symptoms that had me a little nervous that perhaps I was dealing with something which I would consider to be scarier than muscular dystrophy. Some friends had asked me if the doctors had ruled out other diseases like ALS and such. So needless to say I was very nervous all over again and pretty scared to hear the diagnosis this time.

This doctor came in and asked me to go over my symptoms. I had them written down and as I read them to him, his face showed that he seemed to be expecting exactly what I was telling him–kinda like he was checking off items in a mental checklist. He also asked me questions like:

“Did you have trouble keeping up with your classmates when you were a kid?” “Yes I did. Always the slowest and last to be picked for anything physical.”

“Have stairs been difficult?” “Yes.”

“I ┬ánoticed your liver enzymes are elevated. For how long?” “The doctors noticed it about ten years ago.” “Let me guess–they never could figure out why they were elevated.” “No sir.” “Well, that’s because it’s related to your muscle weakness. The liver has to work harder to filter the proteins that come from the muscle breakdown.”

In the end he said he was fairly certain that I had muscular dystrophy but that he wanted to do a test on my muscles to make sure. He asked about family history, and I told him my sister had similar struggles. When he found that out he asked me to bring her with me to the next appointment.

One Response to “The Road to Discovery Part 3 of 4”

  1. TJ August 16, 2013 at 11:08 pm #

    Kelli,just wanted you to know that I have enjoyed reading your testimony and look forward to the next installment. Love ya. TJ

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