Thought I would drop a note and let everyone know the latest med update on me. Weve known since 2010 that I have a mass in my chest. It only started growing and changing this past summer and its time for it to be removed. When I went to see the thoracic surgeon about it, he started connecting dots from this mass, to a lot of the other symptoms and illnesses in my history and sent me to a neurologist suspecting MG. November 11th I had neurological testing done and was diagnosed with Myasthenia Gravis. This is a muscle weakness caused by an autoimmune disorder that interrupts the signals from the nerves to the muscles. If you want to know more there is a of lot information on the internet about it. There are also some Facebook pages that MG-ers post to that help you understand the day-to-day we go through. Theyve helped me realize that Im not a hypochondriac; Im not going crazy; all my weight gain is not just because I dont have any self-control about my eating. Blurred and double-vision, not capable of opening the eyelids, not being able to walk or stand, shortness of breath and breathing difficulties, stamina, any type of muscle problems are all among the symptoms. When a muscle is used repeatedly as in walking or exercise or diaphragm control for singing or arms for directing music or voice box for controlling voice or the mouth for chewing and the throat for swallowing (and LOTS others) are among what Ive dealt with or deal with. The Neurologist has requested the surgeon remove the thymus when he does the surgery for removing the mass (now, a suspected thymoma). This will give me a 50-70% chance of moving into remission within a year or two. The surgeons assistant phoned last Thursday to tell me the surgery is scheduled for Monday, December 15th at UTMB, John Sealy in Galveston. She said Id probably have a 3-5 day hospital stay. The Neurologist said he might have to put me in the hospital to do some treatments to help build me up for the surgery but I havent yet heard from him. When he hears about the surgery there may be some changes to this schedule, but if so, Ill post. Im doing okay... some days are pretty good; most days right now seem to be not so good. I feel weak and I hurt; I nap once or twice a day and I dont get out much. But I am... looking for things to improve!!! Love to all !!
Posted on: Sun, 07 Dec 2014 20:55:00 +0000
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