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Hello everyone, I so appreciate the courage so many have to express the challenges associated with MG from diagnosis to treatment plans. My MG journey, like many others, has been very difficult almost from the beginning. I will now stay with my current issues to stay on topic and don’t become too lengthy.
It was 2 years before finally gaining minimal control with Vyvgart. My mg-adl went from a 15 to 6 at the low. Unfortunately, after 1 year Vyvgart no longer lasts to the next dose. The last 2 cycles I needed IVIG to help slow symptom progression. I also take prednisone. I have mestinon but don’t tolerate it well. Needless to say I’m still in search of the best cocktail for best control and my new “normal”.
Like the others sleep pattern, I do have central sleep apnea, a healthy diet, now I have steroid induced diabetes, stress, and activity/exercise each influence the severity of my symptoms. I often call myself a work in progress in finding the balance between these modifiable factors.
Forgive the length of the post, I’m a 1st time commenter and am told I can talk too much often.