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Lisa,
I can completely relate to what you are going through!
Although I have only been diagnosed with MG for about 1.5 years, I have struggled with finding doctors who understand MG, much less understand the frustration that is causes the patient.
My neurologist refused to order bloodwork to determine if I had MG. I had to request the tests from my primary care doctor!! She said that we couldn’t test for everything because we just don’t have that much blood!
I had an MG crisis in January and went to the ER. They kept me waiting for 11 hours and kept ordering tests. They wouldn’t tell me why they wanted the tests and wouldn’t allow me to speak to a dr. It turned out that they could not reach a neurologist (at the hospital?) for all that time.
My approach has been to learn as much as possible about MG and to try to get into many national clinics (Mayo, Cleveland, etc) and try to see as many neurologists in my state that I can. I spend the morning of most week days making phone calls and follow up phone calls.
My persistence has paid off. At the ER, they took a chest x-ray which showed a mass in my chest. After seeing another neurologist, she sent me to pulmonary about the mass who sent me to our teaching hospital to see a neurology disease specialist. He believes that it is my thymus and know immediately the connection with MG and has sent me to follow up doctors for surgery and care.
The frustrations are real and the resources to help us are very rare. My advise would be to keep trying doctors and clinics until you find that “angel” that has the knowledge and sympathy to give you the care that you need.
I was diagnosed with sleep apnea and use a cpap. I have often wondered if the breathing issue is related to muscle weakness (MG) and breathing muscles. Do the sleep study! Anything that makes you better is worth it even if it isn’t directly connected to MG.
In the meantime, know that you are not alone in this. This is a wonderful community where you can connect with others who are struggling. Keep the faith and keep fighting for the right doctors to take care of your health.
My best to you,
Michelle