Coping With Myasthenia Gravis

When I was in the fifth grade I caught the seasonal flu. I just couldn’t seem to shake it. After about three weeks the Flu symptoms went away (all except for the fatigue). When i finally went back to school at lunch I choked on a hot dog at lunch. From then on I had to literally use my fingers to eat because my mouth was so weak.

My family thought that I did it as post traumatic stress to choking. I also did alot of beauty pageants when I was young and I entered one about 3 months later and everyone kept telling me to smile and I WAS smiling as big as I could. My facial features completely changed due to the weakness of face muscles. When summer time came around I had a very hard time swimming, when before, I was a VERY strong swimmer for my age. It was also very hard for me to talk and the way I talked sounded like I needed my adnoids taken out. I went to a ears nose and throat doctor and many doctors after that. Finally about after a year of my family wondering why I was so weak, why I ate the way I did, why my speech was impaired, and visiting many doctors and having many tests ran, they finally did a MRI on my brain.

The MRI results came back with a small cyst on my brain so I was referred to a neurologist. Though the cyst had nothing to do with my symptoms, as soon as the doctor walked in he asked my mother “Is her mouth always opened like that and are her eyes always drooped?” Then he heard me talk and knew right away that I was an MG patient. The next day he sent me into a Pediatric Neurologist and there they admitted me into the hospital to run some tests. The first test they ran was a tensilin test. As soon as they put the medicine through the IV i was a different person. I had an actual FULL smile on my face. At that moment my family finally saw hope, after a year of going through many possible diagnosis of many different diseases that just didnt quite fit. Then my doctor told us of all the treatment plans.

First she prescribed me 60mg of Mestinon three times a day but later it was changed to the 180mg timespan once a day and 60mg as needed. Then about 6 months later I was sent to UAB to have a Laparoscopic thymectomy because my thymus gland WAS enlarged. This did in fact decrease the severity of some of my symptoms along with the Mestinon everyday. Growing up I also had a slight case of scoliosis. 6 months after my thymectomy my doctor noticed how severe it had gotten so I was sent to an orthopedic surgeon I had two curves in my spine, one being 75 degrees and the other 26. My doctors believed the muscle weakness around my spine caused it to become so severe so fast. So then just a year exactly after my thymectomy, I was going through a second serious medical procedure and had a spinal fusion. So my middle school years were pretty much left behind me and it came along with the price of depression I had went to the same school my whole life and was very popular and had alot of friends but when I came back to school my self-esteem was really low and my social skils werent what they used to be. Luckily, my freshman year the old Hailee came back around. My Junior year I actually made the cheerleading team, but I obviously had a few limitations that the other girls didn’t. My symptoms have not gone away but the Tymectomy and Mesitinon every day keeps them under control. I still catch just about everything that comes around due to my low immune system. I am now a freshman in college and I like to think of myself as a normal student. I still wake up feeling some symptoms but when I take my Mestinon they go away. The only side effects I’ve had from Mestinon is dry mouth and diarrhea.

My third cousin actually has MG as well so that is more evidence that MG is in fact genetic. Around my period every month my symptoms do become more noticeable. Unfortunately I turned 18 three months ago and that mean I have to leave my Pediatric Neurologist that I’ve been with for so long and I am currently looking for a neurologist in my area that has alot of knowledge on MG. But other than that I lead a normal life and dont let being an MG patient phase me.