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Severity of MG and Treatment Plan
Re-posting this in the right forum group.
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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2 Replies
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I’m in the same boat. Diagnosed in July but had symptoms for years. I have Seronegative mg. I started Vyvgart on Wednesday. No improvement yet. I did have a flair the end of August. While in the hospital I received an IVIG infusion. That helped but it only lasted a couple of weeks. I do take mestinon every 8 hours also. Best of luck to you!
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I’ve been diagnosed for a year. My symptoms are mild compared to yours. I’m on mestinon daily. Tracking my ADL and fatigue on my app has made everything more bearable. On days/weeks when I’m overwhelmed and tired I can look back and see if my symptoms are getting worse or if I’m just being emotional and/or depressed.
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