Oct 24, 2018
The participant has had trouble walking her entire life. As a child, she used foot braces and started using a cane when she was 35. In her 40s, she started having arm weakness as well. Currently she has numbness and sharp burning pain in her hands and feet. She is no longer able to walk and uses a power chair. She also has episodes that she describes as “drop attacks” where she loses consciousness and appears asleep. During these episodes, she cannot move and her husband reports that she grinds her teeth and that he cannot wake her.
In the last 5 years, she has also started having difficulty swallowing (dysphagia). As a result, she is only able to eat soft foods and has lost a significant amount of weight. She also has issues breathing (dyspnea) and with double vision (diplopia). Her husband has reported that she has been struggling with memory. An EMG was recently performed, which showed myopathy without denervation. There was no evidence of a motor neuron disease, like amyotrophic lateral sclerosis (ALS).
If this participant sounds like you or someone you know, please contact us!