The Beginning of a New Era

They admitted me to the hospital and the next day I was put through a series of tests. A full evoked potentials, lots of blood work and an EMG.

The EMG is a test where they take little needles and insert them into the arm, leg, face, neck into a nerve and send an electrical impulse to check the nerve reaction. In me, they were looking to see if the reaction was less significant with each impulse, it did.

The doctor doing the EMG was asking me questions throughout the whole test. About the 4th needle poke, he asked me if I’d ever heard of Myasthenia Gravis. I’d not recognized it as the words used by the residents, and said “no”. He did a couple of more pokes and started to explain the nature of MG to me.

When the test was over, he sent me up to my room telling me that now that we have the answers, things would get much better.



That evening they explained to me, my husband, mother and sister what Myasthenia Gravis was. (I also asked them to write it because I could not understand what they were saying “Mya what?” ) They explained that they had one more test to do in the morning and if that was positive they would immediately start me on the appropriate treatment.

I went to sleep that night in the hospital, not sure if I was relieved or scared. I had no idea what to think. I slept fitfully and woke up the next morning more tired than I’d been when I went to sleep.

Around 10 that morning the attending physician for OU came into my room with an IV needle and 2 viles. He asked my permission to have residents and medical students observe the test .The test is called a Tensilon test. It was such a rarely performed test, it may be the only time they got to see it. I agreed and immediately 11 doctors and medical students piled into my room. On their heels were 4 other doctors who had heard it was going on. The resident that first figured out it was Myasthenia Gravis was not there. He had an emergency on another floor.

They had me lift my leg as high as I could, I was unable to get it an inch off the bed. My arms I could only raise about 3 inches. They handed me a blood pressure cuff to squeeze as many times as I could. I pumped it 2 times then couldn’t get the rubber to budge. They had me say the alphabet and I slurred as many letters as not.

The doctor explained that the reason for that was that they would re do them after the medicine and measure results. He had 2 medicines, the first would be given and they’d repeat the legs/arms/alphabet tests, then they’d give the second. They gave the first and nothing happened. If anything, I’d done worse, I was unable to lift my leg at all or squeeze the bulb.

They gave the second medicine and said to wait about 30 seconds. After 30 seconds they asked me to lift my leg as high as I could. It shot clear up as if I was still in my cheerleading days! My arms both raised up and down and up and down and up and down. They handed me the cuff and I started to squeeze it, all the way in over and over and over and over again. I could talk without slurring and the double vision that had been a constant for over 2 years was gone!!

It was a miracle! The resident that had figured out it was MG came walking into the room and the attending said “you missed it, it was a gross success”

The Resident came over and gave me a hug. Then they warned me that there was only a 5 minute half life. Very soon after the warning, my vision started to go and the weakness came back with a vengeance. My muscles were not happy to have been used so much in so short of a time and let me know.

A nurse came walking in with a little white pill. The doctor explained to me that it was a drug called Mestinon and that it was similar to the Tensilon except that it has a 2 hour half life and is not as complete it it’s ability to resolve symptoms. It would help to control them, not make them go away as the Tensilon had.

They spent the next 20 minutes talking to me, explaining what MG was: An autoimmune disease that often has the onset suddenly following a physical trauma. The most common onset causes are car accidents, flu and childbirth. It is so sudden that you’re OK one day and ill the next. The damage it does is immediate.

The Mestinon was not a treatment for the disease, it is a symptom control medication. They needed to do a surgery called a thymectomy. Again, it sounded foreign to me and they had to explain in detail. The thymus is a gland that is part of the immune system, it is right behind the breast bone in the middle. Research has shown that the thymus may play a role in the disease Myasthenia Gravis. They would be opening my chest, just like for open heart surgery, but my heart would not be touched. They would remove the thymus. In some areas of the country they would go through the cervical area and remove it laprascopically but it had not been proven to be as effective and that there had been cases of thymus being left in, which then had to be removed with the transsternal method. It wasn’t an option for me, as there were no doctors willing to do the transcervical on me.

Around 12:30 pm, I started to feel more tired again. It had been 2 hours since the Mestinon and I could feel my strength dissipating by the minute. I called the nurse in and she said she’d let the doctors know, but it was scheduled to be given at 3 hours. A few minutes later she came in and said that they were going to give me another at 1, and then at 1:30 a neurologist would be in to see me. They needed the Mestinon to be in my system for 30 minutes, so I needed to hang on till then.

I laid in bed, feeling my energy dissipate by the minute, watching the clock till 1 pm … feeling desperate and scared as this miracle pill became less and less effective. By 12:55 I was in tears because I could barely move again. The fear that the next dose would not work was palpable. What if they’d given me just enough of an insight of what normal felt like only to have it never happen again. Memories of feeling normal during labor and having it come back were front and center in my brain.

The nurse came in to find me in tears. She gave me the Mestinon, which I had trouble swallowing, but finally got it down. She held me for a while, letting me cry, literally on her shoulder. She talked to me in a soothing voice assuring me that I did have MG and that the meds would work again. By 1:15, the feeling of strength came back and I was able to breathe and the tears dried up. The nurse left my room and said the neuro would be in shortly.

At 1:30 a man came into my room, shook my hand and told me that he was Dr. M. He had been called in by OU medical to evaluate and establish dose of the Mestinon. He explained that too much Mestinon gives side effects like : weakness increasing with use, sweating, stomach cramping, diarrhea and nausea. Because of this we had to balance how much to take without taking too much. Patients often continue to overdose because of the weakness. Too much Mestinon can be similar to too little.

He also explained that the thymectomy should be done sooner than later. I told him that my husband was a student in another town and was unable to be there till full time to take care of me and the kids till school was out, and my mom was a teacher so she had the same problem. He said June would be fine, but don’t wait any longer than necessary. He then explained that after the surgery I’d be started on a drug called Imuran and another one called Prednisone.

The explanation of the suppression of the immune system to treat this disease went way over my head. He said it was ok because it’d be a bit before I was started on them and by then, I’d understand.

He asked me to get out of bed while he watched me walk and step up on a stool and several other things that I’d not been able to do in a very long time. I was able to do them and kept crying. He’d laugh as I’d cry. He told me that this experience is one of the most rewarding of being a neurologist. The little white pill that changes a life from unable to move to able to move and watching the joy fall down cheeks in the form of tears … it doesn’t’ t happen often in medicine, but when it does, it’s a high point.

He left me and said that he’d order the Mestinon for every 3 hours, but did not want it closer because of the overdose issue.

An hour later, he came back, the Mestinon was wearing off and my frustration was rising. He had me repeat the tests a couple of times, each time it was harder than the last. This time, the tears were of frustration.

When the 3 hours were up, the nurse came in. I’d learned very early that I was going to love this new medicine.

The next morning my sister in law came to see me. She was on a break from her job as a nurse in the surgery unit. We talked and laughed and I got up to walk her to the elevators. A truly exciting experience for me. As we were walking down the hallway she dropped a bomb on me. “I called mom and said that there really *WAS* something wrong with you and that you’d not been faking it after all.”

That took the breath out of me and I could feel the blushing rise to my face. Anger and frustration. How could she have seen me day in and day out and thought that I was faking?