| Short Bio |
- I am a 61yesr old grandmother to two little boys who are my pride and joy. I was diagnosed with MG with the lrp4ย antibody in March of 2024. I had been back and forth to doctors for well over 7 years with symptoms. The most bothersome symptom I have is shortness of breath and very blurry vision. I have all of the other muscle weaknesses that go with MG. I was very active and enjoyed hiking and kayaking and regular workouts at my gym until I began to experience more and more severe breathing issues and muscle weakness. At the end of 2023 I came off of a hike with terrible double vision. Thought I was actually having a stroke. I followed up with a cardiologist and ophthalmologist who immediately referred me to an ophthalmologist who specializes in double vision. This young ophthalmologist immediately put all the pieces of the puzzle together and told me I had myasthenia gravis. I was completely unaware of this disease but I am forever grateful to her for finally figuring out what was wrong. After a battery of test, the last blood test confirmed the lrp4 antibody. My neurologist refers to this as a “rare bird”. First line of treatment was mestinon but I have a terrible time with stomach issues and muscle cramps. I’ve also been reluctant to take long term steroids as I have early osteoporosis. MG put me in the hospital recently for 8 days due to severe breathing problems and muscle weakness. I had 5 plasma freesis infusions to stabilize my symptoms. After weeks of dealing with the insurance company to obtain an authorization, I just had my first infusion of Vyvgart. Fingers crossed that this will give me some quality of life back and allow me the energy to stay active with my grandsons and get back outside hiking and kayaking. I will keep you posted.
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| How long have you or the person that you are caring for had MG? |
Diagnosis 1 year, symptoms over 7 years
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