May 20, 2013: Today was the day of the visit to another doctor for a second opinion regarding my myasthenia gravis diagnosis last year. My neurologist here in Austin has been working with me for nearly a year to stabilize my symptoms. I started out on Mestinon. It has done very little for me. It helps my eyes but shreds my stomach. After a couple of months, he started me on prednisone–evil, evil prednisone. It has done very little for me outside of adding 45 pounds to my frame!@#$$%# It could be worse, I guess. I could have the increase in appetite that most people get from taking prednisone. I’ve not had that side effect. Just a ton of extra fluid building up all over my body. I swear I slosh when I walk. Then the last medicine he tried on me, IV-Immunoglobulin (IVIG) earlier this year nearly killed me–literally. I ended up with acute hemolytic anemia thanks to an antibody reaction, which caused my red blood cells to self destruct. I ended up in the hospital for three days. This visit made me hate hospitals even more than I did before that dreadful trip. But I digress…
All of the above events have led me to see a set of specialists in San Antonio to see if I truly have MG, if there’s anything else going on with it or instead of it, and what they see as the next step for treatment.
I met the first doctor. Nice lady, a little distracted. Apparently something was going on outside that kept the nurse coming into the office while I visited with the doctor. She left the room a couple of times.
After visiting with her, I was shuffled off to another doctor who would conduct the EMG (electromyograph/nerve conductivity study). I had an EMG last year with my current doctor. It was not pleasant, but I survived. I had my mind set for that level of pain so I was mentally prepared for what was about to happen…or so I thought.
This doctor was very nice and very, very cute. Those adjectives changed to complete opposite words when the test started. I was so tempted to punch him! I made it through ~40 minutes of the 50-minute process and had to tell him to stop. The shock treatments on the hand, arm, and face were dreadful. The single-fiber EMG on the hand and arm sent me over the edge. There was no way that needle was coming near my face! The doctor asked if I wanted to take a break and continue. I told him hell no. I was literally in tears and not even ashamed of it. I barely said bye to the doctor. I promise you I will never endure another EMG. I now know my official pain threshold!
I later had a bone density scan and more blood work. Mind you, I was not very happy for the remainder of the day. Fortunately, a friend lives near the facility I visited. I went to his place to mentally recuperate before driving back to Austin.
Those people better have enough information from my torture session to tell me what’s up!