I had minor surgery in September 2006. I was scheduled at 10:00 am, out by noon, home by 4:00 pm the same day. I stayed three days in intermediate care at Downtown Seton Austin Texas. They couldn't wake me up and no one knew why.
After the surgery, I had no energy. I thought it was because of my age (56) and weight. Before the surgery, I exercised every day and walked several miles every third day. After the minor surgery, I couldn't do this anymore. I was told "As you get older it is harder for you to get over surgery, no matter how minor."
On Sunday, November 5, 2006, I was hanging a drawing in my living room for a party I was having the next day. When I started to lift the framed drawing, my arms did not move and I almost fell off the ladder. My legs became weak, like jelly. I screamed for my husband's help. Both of us thought I was just tired.
I took a nap, but when I got up, my body felt like it was still asleep, nothing moved like it was suppose to move. I was scared to death. Every time I moved, the movement was labored. At night, I went straight to sleep and when I woke up, I felt better, but each movement was difficult and any task became worse as the day progressed.
I called my family doctor, Dr. Enriquez for an appointment. After examining me, he told me that he thought that I was having problems with my thyroid, again. He took blood and I went home to wait for the results. Within a few hours, my fingers on my right hand started drawing up against my wrist. I called Dr. Enriquez's office and told the nurse what was happening to me. I heard her tell Dr. Enriquez about my hand and he told her "Get her to a neurologist, immediately." Thank God Dr. Enriquez sent me to a neurologist. Some doctors attempt to diagnose the problem for months before another doctor is called.
I couldn't get an appointment with the neurologist until November 20. During the days before my appointment, I deteriorated rapidly. A computer mouse was one of the easier things for me to use. I spent most of my days on the internet. I looked up "Weak Muscles". There were so many things listed. I read each one and stopped on Myasthenia Gravis. It seemed to explain everything that I was experiencing.
Before my appointment with the neurologist, I started having problems breathing and swallowing. In the morning, I could go to the chair and the bathroom, but the afternoons were bad. My movement was limited. My husband, Larry, helped me move when it was later in the day. My face was drawn, my hands were turning inward and my legs were like jelly. When I was able to eat, I sat in my sewing room and sucked on fries. I sat in the chair and thought; I wasn't going to live like this. I wasn't going to let my family watch me deteriorate. I thought about how I could end it all. Each time I thought this, I little voice in the back of my head said, "Give the doctors a chance."
November 20th finally arrived. By this time, I had severe double vision, my hands weren't functioning, my face was drawn, I drug each leg from one point to the other and I cried all the time. It was horrible. I knew I was going to die. When we got to the doctor's office, Larry helped me out of the truck and practically carried me into the office.
As a new patient, one must complete new patient forms. There were so many people in the office. I didn't feel comfortable telling Larry what to write on my new patient questionnaire, so I printed with both hands and cried. I will never forget the feeling that I had and the fact that I couldn't control my body.
When it was time for my appointment, the doctor sat at the desk and I sat in the chair next to the desk. He started his little talk. "What seems to be the problem?" When I found my symptoms on the internet, I wrote with both hands, Myasthenia Gravis. I gave him the piece of paper, "What is this and how do you say it?" He asked, "Where did you get this because Myasthenia Gravis is very rare. Ms. Joslin, when we read things on the internet we sometimes feel that we have the symptoms that we are reading." I asked him, "Do you think I am an idiot?" By the end of the examination, he said "You know, I think you do have Myasthenia Gravis, but we have to do tests."
That day he sent me to the hospital to have an MRI, X-rays, CT scan, and so many other tests I can't remember. They tested me for everything just in case. He thought it was MG, but he wanted to make sure and careful before any official diagnose.
Before I got the test's results, we celebrated Thanksgiving. This has always been a great holiday for our family. Everyone travels in from out of town and there's always so much fun. I am usually the one in the family that prepares most of the meal. I couldn't do anything. No one seemed to mind doing my duties, but I felt useless.
My daughter combed my hair, put my makeup on, and helped me get dressed. Watching me was devastating for her. I saw it in her eyes. She never really cried in front of me, but a mother knows. This was the most difficult for me. I watched my family and friends get emotional when they looked at me. What a feeling I had? I felt guilty for putting them through this and there was nothing I could do. All I remembered during this time, was the little voice, "Give the doctors a chance."
Monday finally arrived and the doctor called from out of town. "Linda Ann, I'm sorry, you have Myasthenia Gravis. You must come to see me Thursday when I get back." I became hysterical. What a terrible thing to happen to me? What did I do to deserve this? How will I live with this garbage? I wanted to die. All these thoughts flooded my mind and I heard the little voice, "Give the doctors a chance."
Thursday finally arrived. I was so much worse. I could hardly move and my breathing was labored. I had to stop every step and rest. At night, I had to sleep sitting up because breathing was difficult. I met with the neurologist. He prescribed Mestinon and instructed me to go to St. David's Hospital, Northwest, immediately. In nine days, I had two surgeries for two mainline ports and five plasmapheresis treatments. Gradually, the doctor prescribed 60ml steroids per day.
The steroids tore me up. I gained 50 lbs, had steroid acne, stretch marks, bruises, discolored skin, lost nails, dark hair grew everywhere and I was an emotional wreck. I took 60ml per day for 6 ½ months. I stopped taking them after 6 ½ months, then I started Imuran which is a type of pill Chemotherapy.
While taking steroids and Imuran, the neurologist thought it would be better if I stayed away from crowds. From November 2006 to September 2007, I stayed home and if I did get out, I wore a mask. My immune system was compromised with these medications. Although I felt better, the side effects were less than desirable.
I retired from the Postal Service after 34 years in January 2006. In November 2006 I was diagnosed with MG. This is not what I had planned for retirement. It has been very difficult for me to accept. I have yelled at God and cursed him, hoping to change the outcome. Of course that was not effective. Now, I realize that I have this for a reason. This deduction has been hard for me. I am a person that has to know what's going on at all times. I'm not sure that I have accepted MG to this day. Each day, I talk to God and ask Him to let me work with what I have and guide me as to what he wants for my future. I start out each one of my days by, "God, please point my feet in the direction you want me to go and help me follow."
This experience has brought me closer to God and closer to knowing that Jesus has been my Savior since October 19, 1964. As humans we sometimes drift from him, and he gently guides us back. Often, he uses a sledge hammer to get our attention, but he had to use a jack hammer on me.
For three years riding in an automobile was tiring for me so Larry and I have stayed home. I sewed most days and I enjoyed it. I don't know what I would have done if I hadn't started quilting. During my isolation, I missed being with people, but it was good for me. I appreciate the little things. I appreciate friends and family calling and visiting much more than I did before MG. Everyone has been wonderful and supportive.
In February 2008, the neurologist told me that there was nothing more that could be done to make me feel better. I started looking. Dr. Erika Simpson at Houston Methodist prescribed a sleep study and found that I have a severe case of sleep apnea, which many MG patients have. I have been treated for this, my Imuran was increased which started to effect my liver, so they reduced the Imuran. After the problems with my liver, Dr. Simpson told me that I must have a doctor in Austin. She suggested Dr. Adam Horvit.
I met with him and he suggested IVIG (Intravenous immune globulin). The IVIG treatment is a blood product administered intravenously. It contains the pooled IgG G extracted from the plasma of over one thousand blood donors. IVIG's effects last me three to four weeks. Dr. Horvit is attempting to find the right formula so that I will feel better.
Today I feel better than I have for the last 3 ½ years. I am doing very well. I'm not like I was before being diagnosed. I get tired and frustrated, but it is not like it was in the beginning. When I have done too much or get too hot, I get double vision and have labored breathing. It takes me a little longer to do things and I have to complete projects on my time frame. When I get tired, I rest. My family and friends understand this and are very patient. Thank God, I listened to the Holy Spirit and gave the doctors a chance.
When I first was diagnosed, I went on the internet to attempt to learn about MG. I bought several books and found that the National MG Foundation was a great source, but there was nothing local. Although, National helped me understand MG and that it is not life threatening if managed, I wanted to talk to others with the disease. This is why I started the Myasthenia Gravis Support Group Central Texas.
We meet every second Wednesday of the month at the Spicewood Springs Branch Library in Austin Texas. I have learned so much from people that come to the meetings. Everyone that comes has gone through different hardships with MG. There are so many successes in our group. Several people have had MG for many years and live normal lives. This has been encouraging. We share our secrets and tricks for living life with MG. It is so helpful.
We all must remember that each MG patient is different and each treatment is different. This is why it is called the Snowflake Disease. Sometimes it takes awhile for the treatment to work. Over three years ago I was told that it would probably take two to three years for the right formula to be found to help me. It will happen.
Linda Ann Joslin
April 2010
