Coping With Myasthenia Gravis

Hello. If you are frightened or just learning of this crazy disease, I do know exactly how you feel. My Mother is now 87, and tomorrow I will admit her at her doctors order to do IV treatment that I am praying will help her. For a month she has progressively gotten worse with dropped eyelids and weakness. Steroid dosage is high and she is not responding, so the lungs could be next in this decline if not preempted with the IV. She has been scanned and found clear of thymus tumors or enlargement, and was relatively healthy until Nov. ‘06 when she got a flu shot. She was admitted to the hospital presumably with pneumonia and sent home with droopy eyelids and oxygen 24/7. Three months later I was able to get the blood test confirmed and a local neurologist treating her. If my Mom had choking or extreme problems with movement or breathing I would not hesitate to go to ER. In my desperation for answers, I went online to ‘droopy eyelids’. Cosmetic surgery and Myasthenia Gravis were the resulting possibilities for diagnosis. It remains a mystery to me how anyone gets help with this at all. I do believe her age and costs of tests were factors in this plight for a diagnosis. The cause of a setback is frustrating as well. I know that heat, stress, lack of fluid intake and repetitive use of any or one muscle will become weak, requiring rest. Find a neurologist to test you, and get the treatment you can get and move on with life- just don’t waste time suffering in silence or fear. This disease is rare and crazy yes, but it only has wierd symptoms that many don’t recognize, it doesn’t kill you.