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Severity of MG and treatment plan
Hello, I am newly diagnosed and trying to understand the severity of my diagnosis and its treatment. In the last few months, I have read and learned a lot about the clinical symptoms and recommended treatments, but know little about what actually works for others. Here is my diagnosis and treatment information and I would love to compare notes with others.
Diagnosis: Primarily Bulbar Symptoms, ACHR+ with no thymoma
Duration: a few months
Severity: MG-ADL score of less than 5 most days
Treatment: Vyvgart with Mestinon as needed.
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1 Reply
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The only thing I’ve learned for sure with MG is that everyone experiences it differently, and we don’t all respond to treatments in the same way. What works really well for one person might not necessarily work for another.
For me, I’ve found that the best approach has been to trust my doctors and stay open to different ways of managing my symptoms alongside my medical treatment. For example, massages and paying attention to my diet have been helpful for me, but even those things are very personal and may not have the same effect on someone else.
I think living with MG is also a journey of self-awareness and learning to listen to your body. It takes time to understand your own patterns, and for me, the biggest lesson has been not to put too much pressure on myself or stress about finding the “perfect” way to manage it.
Being patient, staying curious, and being open to trying things safely has helped me a lot. 😊🌷
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