Neuro Note #6: Holly's Story
Holly's Story: My experience with treatments for Myasthenia Gravis (MG)
I chose to dive deeper into the condition Myasthenia Gravis by watching a youtube video titled, "Holly's story: My experience with treatments for Myasthenia Gravis". Before I watched this youtube video, I had no idea what MG was. After the video, I had to look at alternative resources to really gain an insight on this disorder. Myasthenia Gravis is an autoimmune disorder where antibodies destroy communication between nerves and muscles. Specifically, it affects voluntary muscles like those that control the eyes, mouth, throat, and arms/legs. Unfortunately there is no cure, but medical management can help people live almost asymptomatic lives. Like Holly, when someone is having a flare up or a "myasthenia crisis" it means they can have trouble swallowing or breathing.
Holly is a wife and mother of seven and was diagnosed with Myasthenia Gravis in August of 2015. Holly started out having fatigue. Her primary care dismissed it as Mono due to her being diagnosed with Mono at least six times since she was thirteen, she is now forty. However, overtime she started experiencing random choking fits where she could not swallow or talk and her fatigue became worse. She started experiencing double vision and at the time she thought she needed glasses, but they did not help with the double vision. Double vision is a common symptom of Myasthenia Gravis. Finally, her primary care doctor diagnosed her with Myasthenia Gravis and is getting treatment prescribed by a neurologist. She started off on a medication called Mestinon to see if it combated the symptom of double vision and if it worked the neurologist would clinically diagnose her with Ocular Myasthenia Gravis. Medications for MG is not a cure, it's a 'band-aid' as Holly describes it. Later on, she was diagnosed with generalized MG because as time progressed she could not stand longer than a few minutes to wash dishes, needed help with her hair, had ptosis on one side of her face, speech was slurred and she could not hold up her upper body so she had to switch treatments. The neurologist then prescribed her Prednisone but as they upped the milligrams she was not reacting well to the medication and decided she would rather have the symptoms of MG than be on Prednisone. During this time, she had a myasthenia crisis and had trouble breathing but with rest she could regulate it on her own. If she had continued on Prednisone she would have had to take insulin as well due to the Prednisone affecting her sugar. The last treatment she received was IVIG and it worked great. However her insurance only approved so many treatments a year so her doctor had to continue asking for more treatments. IVIG helped her cook Thanksgiving dinner without help and fatigue. Unfortunately, her husband found a new job and they had to move out of state so she has not received IVIG in a couple months due to the move and her symptoms are slowly coming back. She is seeing a new neurologist soon and is hoping they prescribe her IVIG and hoping she does not have to restart the whole process. IVIG is an infusion therapy.
In relation to my Neuro Aspects class course content, we have not learned about Myasthenia Gravis but we will be learning about it soon so I am excited to see if Holly's symptoms align with the common MG symptoms and the process of being diagnosed. Holly stated Myasthenia Gravis is not well known in the healthcare field. When she goes to the emergency room, she feels they do not know how to treat her in regards to her MG. I think if you have little knowledge on something, it is your duty as a health care provider to research and learn about diagnoses for better client care. Listening to Holly's story on the process of finding the best treatment for her, made me understand better how to plan interventions for my future clients with Myasthenia Gravis.
References
Myasthenia Gravis. (2023). Johns Hopkins Medicine.
https://www.hopkinsmedicine.org/health/condition and-diseases/myasthenia-gravis#:~:text=Myasthenia%20gravis%20(MG)%20is%20a,%2C%20mouth%2C%20throat%20and%20limbs.
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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