"My Story"
by Melissa Ray
When I was born I appeared to be normal except that my eyes were stationary. The theory at that time was that my eye muscles had not developed fully before I was born or that my birth mother was very young. Since I was adopted this remained a mystery. When I was four my pediatrician tried to talk my parents into experimental eye surgery to see if he could make my eyes move. Luckily my father was a firm believer in “if it isn’t broken don’t fix it,” since I could see with no real problems, I did not have surgery.
I was always a little slow physically and had a hard time keeping up with other kids. I had pneumonia about 12 times in as many years. If someone had a cold or the flu I got it and it usually took me twice as long as others to get over it. I was diagnosed with asthma. I spent a lot of time in doctor’s offices because I was “sickly”. Some of them were very good and very understanding but some of them were not. I think the first time my mother ran into a not so understanding doctor was in New York when I was a few months old. He took one look at my mother and one look at me and his first thought was that I was a late in life child that was being neglected. He did a complete turnaround when he found out I was adopted. Another not so understanding doctor told my mother that it was all in my head and I was making myself sick. But by far the worst doctor we ever saw was a very young doctor at children’s hospital that accused my mother of having Munchausen by Proxy. He was so arrogant and sure of himself he treated her horribly. When my regular pediatrician found out what the “young doctor” had done he went ballistic. If the doctor at the hospital had only known or asked about all the amazing things my mother did to try to help me, he never would have treated her so badly.
When I was seven we lived in an apartment complex with a pool. The pool was at the bottom of a long flight of stairs. I had no problem getting to the pool but could not climb the stairs to get home. My mother would have to carry/drag me up the stairs home. Walking any distances was very difficult when I got tired. In our apartment the bedrooms were upstairs, there were many nights when I was very tired that my mother would have to get me up those stairs any way she could. Once she even had to sit on the stairs with me in her lap and basically slide up the stairs. I would drop my fork or spoon unexpectedly while eating. It would just fall from my hand. When I was very tired chewing would be a little difficult and my eyes would be droopy My pediatrician wanted to admit me to the hospital for some tests. I was given Tensilon with no effect. I had so many tests I could not name them all. They took enough blood to test for just about everything under the sun. My antibody test came back normal. The EMG was not conclusive. After a week in the hospital the doctors were able to rule out Muscular Dystrophy, and a long list of other illnesses. This trip to the hospital was truly traumatic for me. Being poked, prodded and tested would be upsetting to any seven year old but not getting an answer made it worse. I felt very alone.
I learned to cope with my limitations. I learned how to turn my head certain ways to compensate for no eye movement. I learned that I did better earlier in the day than in the afternoon, so if I had an activity I tried to do it in the mornings. I also discovered that when I got really tired if I drank orange juice or ate a banana and rested a little, I began to regain a little strength. When I became so weak that I could not get around I ate salt. I even carried salt packets from fast food restaurants in my purse for emergencies.
As the years went by I just resigned myself to this being my life. I always felt alone and like no one knew what I was going through. Some days were better than others, I could go for weeks and not get tired and then one day I would just crash and be so tired I could barely walk. From time to time my doctor would read an article about some illness or another and they would bring me in for a test but nothing would come from it. I was tested again with Tensilon and still nothing happened. When I was twenty-one I underwent surgery for an unrelated issue and had a bad reaction to the anesthesia. A very observant recovery nurse realized I was in trouble. I was on a ventilator for twelve hours and it took another six hours after that before I could swallow on my own. I knew what was going on but could not communicate with anyone and could not even move my arms to reach out for help. It was so frightening. I think it must be what a stroke victim feels like. Even then the diagnosis the doctors came up with was an allergy to Succinylcholine Chloride. No one ever put all the pieces of the puzzle together.
I tried very hard to be like my friends; it took a lot of effort and very often was disappointing because I just could not do it. I even began taking horseback riding lessons. This helped my legs a bit but really helped my self confidence.
When I was in my early thirties I began falling a lot. The final straw was when I was walking in the parking lot at work and fell behind a car. When I used to fall it would take me a little while to get up and sometimes I needed help standing up. Lucky for me the driver of the car realized I was no longer in sight and he got out to check on me. The near tragedy of almost being run over made, me decide to try again to find out what was wrong with me.
After several visits to a general neurologist, he made an appointment for me to see Dr. Oh. Dr. Oh had performed my EMG 25 years before so I was not overly excited about seeing him and did not think much would come from it. Dr. Oh decided to try an injection of Neostigmine since I had no reaction to Tensilon. My husband left the room for a minute and when he returned the shocked look on his face was priceless. He stood there a minute then turned and yelled out the door “come quick”. Apparently my eyes were wide open. My husband said I was “popeyed”, he was worried they had messed something up. Dr. Oh just grinned when he came in. That was the day my life changed. It seems strange that being diagnosed with Myasthenia Gravis was a relief for me. Finally I was not alone. There were other people that knew how I felt and there was a medication that could improve my quality of life. It had taken 32 years to finally put a name on what was wrong with me. After further investigation Dr. Oh determined that I have Congenital Myasthenia Gravis. Shortly after my diagnosis I became involved with the Alabama Chapter, MGFA.
My life has changed so much since then, I am able to walk up stairs without pulling myself up with my arms and I don’t fall much anymore. I have gone back to school and received an Associate’s degree. . I know many who have been diagnosed with MG don’t feel the same way I do about hearing that news, but for me it meant that I had a name for it and I was not alone. After 32 years of being isolated I am one of a group and I can reach out to others and offer support and maybe even a little awareness to others.