Finding the right Treatment takes time: Exploring treatments for Myasthenia Gravis

"Holly's Story: My experience with MG treatments" is a video where Holly shares her experienced being diagnosed and receiving treatments for Myasthenia Gravis. Myasthenia Gravis is a rare neuromusclar, autoimmune disorder that affects the acetylcholine receptors in the neuromusclar junctions, preventing neurons from signaling a contraction in muscles throughout the body. Prior to Holly's diagnosis, she experiences high levels of fatigue, random bouts of choking, and double vision for years. Her symptoms were attributed by the people close to her as a part of the aging process, and by doctors as mono. When the diplopia or double vision became more severe, her primary care physician  began looking into the diagnosis of Myasthenia Gravis (MG). 

In most cases, MG can be diagnosed with a blood test showing the antibodies that attach the acetylcholine receptors at the neuromuscular junction, in this case however, she tested negative. To double check the physician decided to perscribe her Mestinon a version of Pyridostigmine that has been shown to reduce some of the symptoms she has been describing, if this medication reduced her symptoms the physician felt there was enough evidence to support a diagnosis of MG. Following the use of the medication, Holly was officially diagnosed in August 2015 with ocular Myasthena Gravis because her main symptoms the physician witnessed were the diplopia and ptosis (or droppy upper eyelid). However, over the next year her symptoms continued to worsen quickly and her diagnosis was adjusted to generalized Myasthenia Gravis. 

Holly is married with 7 children, and as her MG progressed she found it increasingly more difficult to participate in her basic ADL's like cooking, cleaning, or even brushing her hair. Her family would not let her go anywhere by herself incase she were to fall or become too fatigued. She at times would have difficulty speaking, maintaining her posture, and her trunk stability declined making ambulation difficult. The first medication she tried was prednisone which did help her fatigue but caused a lot of side effects. If she pushed too hard she also would suffer a myasthenic crisis, or respiratory failure. She then changed to Cellcept which caused her to feel as though she had the flu daily. It wasn't until she was prescribed a IVIg or intravenous immunoglobulin until she finally experienced relief from her symptoms without major side effects. An IVIg neutralizes or destroys the antibodies that are attacking the Achtylcholine receptors, allowing for normal muscle activation. 

This made a huge different in Holly's ability to participate in her occupations and remain independent. Holly's story shows that treatment is a process, and in order to get to a place where you are comfortable with your treatment you have to communicate with your care team and be willing to try alternative treatments until one works for you. In the video, she says her most valuable advice for individuals diagnosed with MG is to take the time to research your own diagnosis. MG is extremely rare, and not a lot of health care professions will be that comfortable with it. It is important for individuals as well as their families to be able to advocate for themselves or their loved ones. I chose Holly's story because I think it is important to see the process of a diagnosis all the way through to treatment, and if you are interested in learning more about what it is like living with MG and how to be your own adovate, I highly recommend this video. 

References:

Myasthenia Gravis Foundation of America (MGFA). Myasthenia Gravis Foundation of America. (n.d.). Retrieved September 2, 2022, from https://myasthenia.org/ 

YouTube. (2017). Holly's Story: My experience with Mg treatments. YouTube. Retrieved September 2, 2022, from https://www.youtube.com/watch?v=B8mF1sL5ZMM.