I have lived with Myasthenia Gravis for about 14 years. Fortunately, when I was first having symptoms, our family Dr. "guessed" that it was MG & sent me to a neurologist. I have never had a crisis so bad that I've ended up in the hospital (thank God), but my life (dong simple activities like eating and talking) is affected, in varying degrees. Since the beginning of my diagnosis, I have been very grateful for the opportunity to go to a MG support group meeting, even if no one has symptoms exactly like mine.
I am a 37 year old mother of 3 that lives everyday fighting Myastenia Gravis, I have had open heart surgery to remove a thyomoma, I was not told much about the disease, until 4 years later when I am in a crisis and being treated as a acholoic and paramedics are insisting that I have taken a over dose of narcotics... I could not move could not talk and hearing everything that was happing thinking that I was going to die.. doctors not knowing how to treat, until my husband told them that I take mestanon, and that I had MG, the ER physician had to google what it was, I since by the nurse that also googled what myasthenia was gave me this wonderful support system, I have now found out that there is someone else going through what I go though every day the struggles that i have just to move and to sometimes even to breath, thank you so much for the care and the resourses that you give us when know one else even knows what are disease is
At age 69 I was diagnosed as having MG, and subsequentially went thru a major MG crisis. I had no knowlewdge of the MG, it's origin, effects, etc. I was told of a support group called the MGA and contacted them immediately. Thru their assistance I not only learned of the disease, but was also put in contact with the finest neurologists in my area that worked expressly with MG patients. This organizaetion is vital sourcce of information and assistence to MG patients and their care givers
I have had MG 16 years. When one eye closed, I checked with several local doctors, who could not identify the problem then. Mayo Clinic Neurologist quickly diagnosed the MG, with a simple Tensilon Test. Then a friend recommended the Kansas City Myasthenia Gravis Association. The local chapter provided a free clinic; provided a Neurologist that could diagnose and treat the symptoms. They continue to support patients and family with clinics; monthly education meetings; and contacts with others who have MG.
My experience with the Myasthenia Gravis Assoc has been wonderful. Since the disease was considered fairly rare when I was diagnosed just over 2 years ago, I had difficulty finding information. I was referred to MGA and received information on treatment, medications,clinical research and other resources. This was invaluable because I was also able to interact with other MGA patients and learn from their experiences. So I became a Board member.
I was diagnosed with MG at 40 years of age. I was scared because I had never heard of it and I think a neurologist is one doctor you don't really want to have to go see. I have 2 young children, I am young! The MGA Support Group calmed me down, helped me understand MG and I have always felt that they could help me through this. The newsletter is great, in the years that I have had MG, it has grown as the Association has. They seem to have attracted some very sharp individuals who have really increased the energy and reach of this organization. Bravo!
I contracted MG in February of this year. It has affected my speech,neck muscles and jaw primarily. The doctor that diagnosed this told me they have no idea how you contract MG. I immediatel;y looked to see if there were any organizations that could help me with more information so I could understand my condition. I contacted the local chapet of MG here in Kansas City and I have never been more pleased with the response of "anything we can do to help you" along with all kinds of helpful literature as well. The local chapter also has regular meetings where you can not only learn more about MG but meet other people who have been afflicted with this disease.
My son was diagnosed with MG while he was a cadet at West Point in the summer of his junior year. West Point provided minimal help Walter Reed was outstanding and they recommended, along with others, the MG Association. We asked for, and received, valuable dietary and disease control information until my son could be treated at the University of Kansas Medical Center. The MG Association is composed of some great folks who like to help those in need.