Please Share Your Myasthenia Gravis Experiences

Hello @willowriver. I'd like to invite @pmci, @carrie13, @gmg35, and @nanajojo who have all posted about their MG diagnosis. They may be able to share some of their treatment journeys and what has worked best for them and what didn't.

@willowriver, while we wait for some others to share their stories, if you are comfortable sharing, have you been put on a treatment regimen for your recent diagnosis? If so, what are your concerns moving forward?

Thank you for asking. I’m currently on pyridostigmine with minimal and inconsistent response. I’m wondering if this is all that can be expected from this medication? Some days I can get dressed after a shower without resting between. Or, maybe, I can put away breakfast dishes AND fold a load of clothes. Other days, not. My doctor has talked about adding Imuran. I’m currently undecided about this medication due to potential side effects and risks. I wonder if I might be trading one set of problems for another with potential nausea, vomiting, etc. And, there is lymphoma in my family which I understand puts me at higher risk of this complication from the medication. In addition, how to manage the issue of a suppressed immune system weighs heavily on me. So many concerns.

Is there anyone here who has been diagnosed with myasthenia gravis? I’m looking for others with this disease.

Hi @brighterday, you might be interested in joining these related discussions that were started years ago and remain active:
- Myasthenia gravis; Making an informed decision for my Treatment Path: https://connect.mayoclinic.org/discussion/mg-trestment-path/ -
- Myasthenia Gravis: Share your treatment journey: https://connect.mayoclinic.org/discussion/hi-everyone-let-me-begin-by-telling-you-some-of-my-story/