Doctor One-Seen a year and a half ago for severe muscle weakness which effected my swallowing, speaking, limbs etc… Doctor one spends twenty minutes with me. He does a short neurological exam and though I have traveled far to see him, the doctor tells me he doesn’t believe there is need for testing as he does not think I have a neuromuscular condition. He sends me on my way. We leave the clinic. My husband pushes me in a wheelchair. My arms are propped up on pillows. Discouraged, disheartened, and “dishoped” we make the long trip home in silence.
Doctor Two-Seen last week to perform next test in figuring out the cause of severe muscle weakness effecting swallowing, speaking, limbs etc. This time symptoms are less severe due to medication for Myasthenia Gravis, Mestinon, that has for a year, returned enough strength to my muscles for me to function at a much higher level.
Doctor two, with same specialty as Doctor One, is alarmed that I have gone off of Mestinon for too long; I needed to be off of it twenty four hours before test, not four days as I had.
He proceeds to do a quick neurological exam and to question me about my symptoms. He tells me that both my symptoms and my physical presentation are classic for Myasthenia Gravis and that there is a good chance that the test he will preform will be negative, even if I have the condition. The test is negative.
He communicates the importance of continuing testing at a teaching hospital soon and that I need to take my Mestinon immediately following our appointment. He is concerned about the breathing crisis’s I experience (also a part of Myasthenia Gravis) and instructs me to go to an emergency room should I have another one. I am grateful to be taken seriously and treated with compassion by a kind doctor; I am also confused and feeling a bit nervous as the hospital he wants to refer me to is the hospital where I had the appointment with Doctor One.
Flummoxing is the journey of those of us with complex chronic illness, yet to be diagnosed. What is it that causes one doctor to see the reality of our physical conditions and another to make a quick judgment of another kind?
*I send out gratitude to the doctors who over these years… see me, see my reality even when they don’t understand exactly what’s going on, even when they can’t “wiggle their noses” and fix me, but keep on trying anyway! I wish I could place a blue ribbon with a gold medal around each of your necks.