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The Uncertainty About LEMS With No Diagnosis
I just read Lori Dunham’s Stretcher-Bearers column (linked below) about the time of uncertainty before her daughter, Grace, was diagnosed with LEMS. I’m on the Facebook groups and our Forums here, and perhaps the number one topic is people describing their crazy muscle weakness problems. They think they may have LEMS but they’re not diagnosed, or they’re getting a missed diagnosis or mixed signals from their physician. It’s a chaotic time, filled with confusion, consternation, and struggling to find out what is going on.
In 2009 I became suddenly weak and unable to walk. I was in the VA hospital for a week. Every test you could think of was run. I was seen by any number of doctors. Medical school professors brought their classes of students to my bedside, so I could do my profound weakness dog and pony show for them. I left the hospital in a wheelchair and was not diagnosed with LEMS. That took 8 more years. I can only tell you how elated I was when my neurologist told me, “You’ve got Lambert-Eaton Myasthenic Syndrome.” I was over the moon elated! I got a diagnosis. We started a treatment plan. The mystery was solved.
How was it for you?https://lamberteatonnews.com/columns/2021/03/22/accurate-diagnosis-fog-uncertainty-lifts/
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