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Michelle,
Thank you so much for your encouraging words! We definitely need to be strong advocates for ourselves because no one else is going to do it. I am glad someone is finally paying attention to your thoracic mass – thymoma can be dangerous and I am so grateful to the cardiologist who found mine! I understand that everyone wants to be at one of the national clinics – I have reached out to Mayo recently, and will probably be pursuing that more actively from this point forward. Currently I am at Vanderbilt, which gets a lot of name recognition, but as far as my experience here – I would not recommend Vanderbilt to any MG patients. When you only get 30 minutes with your neuromuscular specialist every 4-6 months because they are “so busy”, and then they belittle you for reading information online to educate yourself about your condition because they aren’t educating you themselves – I just don’t consider that quality healthcare.
I hope you are able to find your “angels” to care for you, as well! I would love to hear of your experience going forward, especially if you are able to get into Mayo or Cleveland Clinic.
All the best! – Lisa