My mother's story began twenty three months ago, after a cardiac cath. that required IVP dye. She started to have weakness,pitosis and excessive saliva. Myself being a RN I blew the weakness off, because of course your going to be weak after a procedure...this was the reply to my mother from me. After three days she returned to work and continued to work for three months without much complaints except for the occasional complaint of moderate weakness and the excessive saliva. Over the next eighteen months she has seen ENT MD, pulmonologist, allergist, surgeon, neurologist locally, neurologist at Vanderbilt University, rheumatologist, and last but not least an endocrine MD.
The first neurologist suspected MG. After all mom's lab results came back negative he decided to send her to Vandy. for SFEMG which also came back negative as well. In the mean time her health continues to decline without an answer. Last week her GP told her it was Psychosomatic and recommended she see a Psychiatrist!! She has lost thirty pounds, she can barely walk from the kitchen to the living room due to muscle weakness. she sleeps sitting up on the couch due to fear of dying due to "trouble breathing", the excessive saliva production has only increased and she feels like no health care provider cares.
I myself had started to believe it was "in her head" until I read her daily diary she had been keeping....I realized Yes my mother does have MG and what am I going to do when my healthcare family won't even help mom. I have decided I will attend every appointment with my mother and they will help her and not pass her off to another colleague!!