For my last neuro note, I chose to watch a video about a lady named Holly who was diagnosed with Myasthenia Gravis. She was diagnosed in August 2015 at 40 years old while being a wife and mother of 7 children. She had complained to her primary care doctor for a few years about feeling fatigued, but thought that it was just from getting older and everything that she had going on in her life. Then, she noticed something new. Primarily while watching TV at night and at some other times, Holly was experiencing double vision but didn't know the correct word for what she was experiencing. She tried wearing glasses for this new vision problem, but they didn't seem to help any. Also, she had noticed some frequent bouts of choking that she found to be unusual and alarming. She went back to her primary care doctor and, after figuring out that what she was experiencing was double vision, he diagnosed her with MG and referred her to a neurologist. The neurologist ran blood work that came back normal but from her symptoms he still thought that she had MG. Holly was then given medication that she was told to take when her symptoms arose and if the medication worked that would confirm that the diagnosis was correct. One day when she was experiencing double vision while driving, she took some of the medication and she said when she could see the individual leaves on some beautiful trees that she was passing instead of just green blobs, she knew that the medication had worked.
The neurologist first thought that she had ocular MG, but over the next year her symptoms progressed very quickly. She wasn't able to stand to wash dishes, cook dinner unassisted, fix her own hair, speak clearly or sit with good posture, and her family didn't allow her to go places by herself because she needed help walking and lifting things. After seeing this progression, she was then diagnosed with generalized MG and given new medications. After trying different medications that caused severe side effects, Holly received an IVIG treatment before a surgery unrelated to her diagnosis. This treatment made her feel great and she knew after being able to cook Thanksgiving dinner that year that this was the treatment for her. She received it for 5 months with the last treatment being in March 2017. Her and her family moved across the country for her husband's new job and she hadn't established a new place to receive her treatment. All of her symptoms had gradually came back over the few months without treatment, but she was optimistic about the future and hoped she could start getting it again soon.
Her biggest advise to others with Myasthenia Gravis was to learn as much as they can about the condition and to always have an advocate that has your medical information and knows about the condition as well. She said there were times where she was so debilitated that she couldn't communicate with medical personnel and they might not always know how to treat a person with MG. Also, she said just because a doctor doesn't see all your symptoms in one appointment doesn't mean that you don't know what your talking about and that it is all in your head. Listen to your body and don't be afraid to speak up when you know something is wrong. Holly is a very brave and inspirational woman and I hope that she has since been able to get the treatment to help her live a more functional, productive, and enjoyable life.
Resource:
Raremark Health. (2017, July 13). Holly's story: My experience with MG treatments. [Video]. Youtube. https://www.youtube.com/watch?v=B8mF1sL5ZMM
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