Sunday night, I started reflecting on the diagnosis process. I feel so far removed from it now that it has been almost 13 years, that I forget what it was like to go through it. I have empathy for those who are going through the diagnosis process for any type of illness. I know the journey of emotions. Every person is different in their processing, both short term and long term.
For me, the diagnosis process was long. I started having symptoms in 1999, but was not diagnosed until 2001. It started with a general feeling of unwell. My mom used to call it feeling “punky”. I had general complaints that lined up with the usual grievances of a child reaching a growth spurt… which made everything seem normal. Headaches, getting glasses for blurry vision, not wanting to go to school.
It got worse around 9/11/01. I constantly tried to get home from school early or just not go at all. My guidance counselor thought I was having trouble processing the terrorist attack (at age 11 at this point). He didn’t take the time to talk to me, allowing me to open up and tell him why I was really avoiding class. My voluntary muscles were beginning to fail at this point. My handwriting was atrocious, and I would drop my pencil all the time in class. My hand simply could not grip it. I had trouble seeing the board, even with my glasses. I had blurry and doubled vision that made me dizzy and gave me headaches. I couldn’t hold my arms above my head, my knees constantly gave out on me, my voice became nasally and speech slurred, my eyelids drooped, and my smile became flat and painful looking. It was hard to chew and swallow, and I quickly dropped weight. I think I stopped wanting to go to school all together when I could no longer carry my bright yellow L.L. Bean backpack (with a hand sewn WWJD on the back). I remember one afternoon when my friend had to carry the bag to the bus for me. But we took different buses, and I knew I couldn’t climb the steps of the bus and carry the bag at the same time. A teacher on bus duty had to help me. They looked a little confused. It got a lot worse when we were getting closer to my bus stop. It was 3 houses away, and I knew I couldn’t walk that far. I begged the bus driver to drop me off at my house. She told me no, and I started to cry. One of my neighbors convinced her, and I sat at the bottom of driveway in tears that day. The first week of October, my mom pulled me out of school.
I think my mom had her suspicions, but no one wants to be that parent that thinks there is something wrong with their kid. I was just sensitive, or growing, or having a hard time adjusting to middle school. She realized quickly that it was much more. She took me to our general practitioner, who I have to say was literally a God send. In one visit, she narrowed down my diagnosis to either MS, Rheumatoid Arthritis, or MG. Further diagnostic tests needed to be done, but she guided us quickly down the right path. The first specialist we saw had no idea what to do with a textbook case sitting right in front of him. MG occurs in about 1 in every 10,000 patients. Everyone in the United States wouldn’t even fill a football stadium. He accused my mom of malnutrition, and told me my head was unusually large for my body. Looking back on it now, we can laugh, but I think that killed my mom a little inside. I was a perfectly normal and beautiful little girl to her, just frail and sick and needing help, not judgment. I was so thin because my body was not physically capable of chewing and swallowing food.
We found Dr. Scavina, another God send, a few weeks later. By Christmas we had an answer. About 14 vials of blood later, we learned that my acetylcholine receptor antibody level was out of control. The normal range is less than 0.05 nmol/L, and I had over 700 nmol/L. They still had to do pulmonary functioning tests and imaging scans at this point. The worst part was the single-fiber electromyography (EMG) which confirmed the MG. It measures the electrical activity between your brain and your muscle, and it involves inserting a fine wire electrode through the skin into the muscle. Not pleasant, and thankfully (thus far) has not had to be repeated. I was swiftly put on an increasing dose of non-steroidal medication, Mestinon, and began to let it all sink in.
There is too much to unpack to fit it all in this post, so I’ll leave it at the technical/medical part of diagnosis. The spiritual/emotional side is a much longer journey and process than what I went through to gain the chronic illness label. This is the point where the real struggle began.