Please Share Your Myasthenia Gravis Experiences

Posted by Just Me @brighterday, Nov 13, 2023

I’m looking to connect with others diagnosed with myasthenia gravis. I wonder what those with more experience would say about what you wish you had known about the disease? What treatments have worked best? How have you weigh treatment benefit vs side effects/risk? Any tips for self care? I was diagnosed only two months ago after several years of symptoms and am on a steep learning curve. Please share.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Justin McClanahan, Moderator | @JustinMcClanahan | Nov 13, 2023

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?

Just Me | @brighterday | Nov 14, 2023

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.