Profile

I worked as director of contracting for a multi-state healthcare organization.  Do to my position, I traveled a great deal and was constantly in meetings. I started seeing my right eyebrow dropping and cases of double vision in my late 50s but did not think anything of it after seeing an eye specialist. I felt weak in my arms and tired most of the time and swallowing and chewing started to become difficult. I also started coughing shortly after eating. My relatives noticed some of these symptoms, but particularly the fact that I was breathing quite heavily.  I also recall going to work on a Monday and my staff saying that as my face was bright red I must have been outdoors all weekend. This was odd as I was indoors all weekend as I did not feel well. It got really scary when after returning from a business trip, I could not get up from my seat on the airplane, and my hand and arm could barely lift my briefcase.  I was breathing rather heavily and one of the stewardesses started asking me if I was okay. I had flown into Burbank Airport which only uses stairs to deplane, and I could not go down the stairs without a stewardess assisting me. I barely was able to make it to my car, and my breathing was extremely heavy and I thought I was going to pass out. My primary doctor had no idea what was wrong with me, I live in a somewhat rural area of Los Angeles County, and he referred me to a neurologist. After going to several neurologist and pulmonologist, finally they diagnosed me with Myasthenia Gravis (MG). In order to keep this brief I won’t go into all the trials and errors I went through with various types of medicine and iv treatments, until finally it appears that taking Pyridostigmine 3 times a day, as well as other medication, and Rituximab injections  twice within a five to six month period, I have improved. I still have MG symptoms but they may not be as severe as they previously were. I have lived with MG for 5 years and it still has limited my activity. I tried to go to Denver last year to spend Christmas with my family and almost was hospitalized as I had such a difficult time breathing do to the altitude. I had knee replacement surgery this year but do to my breathing my doctors would not approve my having general anesthesia. My quality of life has suffered and as there is no local support group in my rural area, I rely on this website to give me insight and information on how to combat a condition that until 5 years ago I had never heard of.