I was asked to write a testimonial about living and dealing with MG. I’ve never wanted to talk about my disability. Now I realize how important it is for others to know about this life-changing disease. Myasthenics, their families, and most importantly, those in the medical fields, such as doctors, nurses, and EMT’s, must know the seriousness of this chronic neuromuscular disease called Myasthenia Gravis (MG).
I live in Pleasanton, Texas. I was diagnosed with MG eighteen years ago. Before this chronic disease took me for a loop, I was an active, get-it-done kind of person. Through the years I’ve had to learn more about my new friend (MG) which is a rare and often misdiagnosed chronic disease!
In 1993 we were living in Harlingen, Texas. I was a full-time college student with two jobs, two children, a husband and with child. Two years before moving to the Valley, I was eating with friends and on the third bite of food, I tried to swallow, but it would not go down. I could not figure what was going on. I was choking and the food was lodged in my esophagus and half way down my stomach. I panicked, could not breathe and ran to the restroom to force the food out! This experience was the first of the many, many times I would endure the process of forcing myself to vomit. I noticed too that it was hard for me to lie flat on my back; I would get very tired, and my arms would be weak and fatigued. My jaw would tire and lock down. My vision blurred and I craved crushed ice constantly all day. The ice seemed to help me with the symptoms. I would faint in the hallways at college because of double vision, weak legs and dizziness, and my speech was slurred.
On October 12, 1993, I went to the doctor because of what I was experiencing, plus I was not able to eat or swallow anything. I had lost so much weight that I was under 100 lbs. and vomiting. The doctor found that I was seriously anemic and my potassium levels were very low. This is when I found out I was with child. I was given pills to ease the vomiting and vitamins.
The further into my pregnancy the better I seemed to feel my energy return. I could walk without weakness, swim, chew, and eat without any problems. I felt GREAT! BUT!!! Every time I went for my checkups, I had blood work done, and my blood work came back with negative reports. My obstetrician couldn’t figure out what was happening. He did numerous tests and all came back bad. We were told the baby could have Downs Syndrome. (I am happy to say that we are blessed with a very smart, healthy, talented son.)
Soon after our baby was born, all of my MG symptoms came back, but I just dealt with them because we didn’t know what was wrong. Six weeks later when I took my son in for his checkup, my son’s pediatrician diagnosed my MG disease. My speech was very slurred and I was too weak to carry my son so that my husband and two older daughters had to do all the work. YES! My son’s doctor was a blessing in disguise. He referred us to a neurologist who only prescribed Mestinon and told us about a surgery called a thymectomy.
Nine months went by and I was feeling a bit unusual so I went to the doctor and discovered that I was expecting our fourth child. So again I was feeling great and not taking much Mestinon. We discovered that when I was with child, my body would kick into a safety mode to protect the baby or vice versa. I felt wonderful the whole nine months.
Soon after the baby was born, all of the symptoms came back with a vengeance, except this time the MG affected my eyes, the weakness was worse, and I could not walk or swallow at all or breathe. I felt as though there was a lump in my throat and in my chest.
My husband was in the process of transferring to a job in Arizona, and we had to move even though I was very ill and the baby was only three weeks old. On the way there, I started having a serious crisis and was hospitalized in Tempe. My husband chose Dr. Erin Bradley as my doctor and she sent us to neurologist Dr. William Grainger. He ordered a chest x-ray and discovered that my thymus was as big as a grapefruit and needed to come out—yesterday.
After my thymus was removed, I got better for six months. I went to work, but I had a crisis while at work so that I was put back on Mestinon with prednisone added. Soon after, I started feeling much better, and soon I was expecting my fifth child. I again had a great nine months, and soon after the baby was delivered, my MG symptoms came back even worse again as before. My eyes drooped with secretions which were a new symptom; neither could I swallow at all. The doctor advised us not to have any more children because there was a high possibility that I could have a crisis which could be fatal. I was hospitalized and had plasmapharesis.
Since then I have had blood transfusions, IVIG infusions, tests, cat scans, MRI’s, hospitalized several times, etc. I’ve had several neurologists in the 18 years I’ve had MG and have learned so much. We have read, studied and done so much research on this humbling disease.
I strongly believe my faith in GOD, my best friend and husband Wayne, our children, our church family, the knowledgeable doctors, the medicines and my strong-willed Type A personality have helped me deal with this disease. MG is now and will forever be a part of my life because it is incurable. However, I will not allow this disease to bring me down, and I thank GOD for giving me the FAITH and the willingness to go on one day at a time.
The MDA organization continues to do research for a cure for MG and other neuromuscular diseases, and my family and I support them with the hope that some day a cure will be found. I’ve attended the MG South Texas Support Group for two and a half years, and they are a wonderful group. We’ve learned so much from these lovely people, my fellow MG partners. I love our motto. It gives me great hope and it’s very encouraging.
YES, my fellow MG’ers—–we are all in this together!!!!
Donna J. Aguilera-Pogue