In 2009, I was finally diagnosed with a neuromuscular auto-immune disease called myasthenia gravis (MG). MG causes extreme muscle fatigue that may affect one’s vision (double/blurry), speech (slurred), facial expressions, swallowing, neck, arms, legs, and breathing. Abnormal antibodies are produced in my body that block and alter the signal sent from my nerves to my muscles. The best way to think of it is like static on a phone. Without a good phone signal, your conversation may become altered. When one without MG goes to swallow, talk, or walk their body’s nerves send signals that reach the muscle, hence creating muscle function without difficulty. When one with MG goes to do the same, the signals sent from the nerve become blocked and ONLY some of the signals may reach the muscle. This causes the muscle fatigue, weakness, and paralysis.
Symptoms started in 2006, my freshmen year in high school and grew so intense that it completely disabled me. The most difficult aspects that contributed to my misdiagnoses throughout the three to four years until diagnosed correctly, were the many unnecessary medications I was issued after doctor’s assumptions. The adverse effects and side effects from these medications further altered my well-being and health, while the doctor’s assumptions delayed my diagnosis significantly altering my physical and mental well-being. I was labeled as having panic attacks, anxiety, and depression in high school after many test results came back negative. One important factor to their assumptions is lack of knowledge in how to properly treat one with myasthenia gravis. This is why advocacy is very important, even with doctors!
In September 2009, I was admitted to the hospital due to extreme difficulty breathing, inability to swallow food and water, and inability to walk. I was in for seven days, and was seen by many doctors from infectious disease to neurology. A neurologist came in to see me and ran tests, and stated, “This is anxiety and depression. You need to get up or you’re going to fail your senior year.” I was focusing on staying alive; not knowing what was wrong with me, let alone finishing senior year. My family doctor, Dr. Eva Geracimos came into the hospital as a visitor, talked to the psychiatrist and assured her something was indeed physically wrong with me. Dr. Geracimos was the only one who understood that I was in an absolute state of anxiety and panic due to my symptoms. The unknown symptoms and debilitation of my ‘normal’ bodily strength were causing the anxiety. Unfortunately, doctors refused to listen to me and made the assumption there was an underline psychological disorder that was causing the unexplainable symptoms. The feeling of hopelessness I experienced derived from a combination of the ‘unknown’ and doctor's assumptions, there was physically nothing wrong with me. Seeing doctor after doctor walk in day after day all dismissing my symptoms, made me feel as if they were not going to do anything to help and my body was going to eventually shut down completely. Dr. Geracimos went on to discuss with the psychiatrist three more tests to be run that were not yet issued and the psychiatrist demanded the doctors test these last three diseases. After blood was taken the hospital quickly rushed me through the discharge process with no diagnosis. I was scheduled for a follow-up appointment with my family doctor, Dr. Geracimos, the following week. Here is where she informed me I have myasthenia gravis (MG). Dr. Geracimos issued me to the best closest doctor that she believed would help me.
After the diagnosis in 2009, I went to a neurologist about three hours away. I did not want to see a local neurologist being that the only neurologist accepting new patients was the doctor that assumed it was all anxiety/depression when he saw me in my local hospital stay. When I saw the neurologist that Dr. Geracimos recommended, I eventually was slowly put on high dosages of steroids and a symptom reliever that I took every four hours throughout the day.
I stayed on the medication, gained my strength back to the point where I could workout, and felt semi-healthy again. I returned after a couple of months for a check-up to the neurologist who was treating me and he told me he wanted to do a thymectomy. A thymectomy is the removal of the thymus gland in the chest. Some people may reach permanent remission, others may see minor benefits, and some may not see much difference after surgery. Once I heard there was hope I would never have to feel these horrible symptoms again, my family and I decided on the surgery and I started training for the procedure immediately. For two to three months, I went to the gym every day for two hours and lifted weights. I then followed my lifting routine with a three mile run on the treadmill. The day of the surgery came relatively fast, and doctors stated the procedure was a complete success.
January 29, 2009, I underwent a thymectomy, eventually weaned off medications, and went into remission. I was in remission for about a year and a half where I was able to fulfill my dream of being a college athlete. All was going well until I started to have trouble again and fell into an eventual exacerbation relapse in spring 2011. I spent the first three days of my relapse in 2011 in and out of the hospital being taken off and put back on different dosages of steroids. In result, my entire body became paralyzed where the ambulance rushed me to the hospital. My muscles completely shut down. I then spent fifteen to twenty days in a local hospital before receiving any treatment at all. The first neurologist came in and said, “I do not see myasthenia.” The second doctor stated, “If you ask me my honest opinion, it is all emotional. I have a patient upstairs that is so depressed and emotionally unstable she cannot remember her name.” The third and final neurologist was the last neurologist available in the hospital so I agreed for him to come in despite my previous experience with him in 2009. He came in, arrogantly stood over my mom, belittled her, then turned to me and stated, “I don’t see myasthenia at all, but I will put you on an anti-anxiety medicine for twenty-four hours and if you are not feeling better I will issue you IVIG. The anti-anxiety medication showed no benefit to my health and he issued me IVIG (Immunoglobulin therapy) for five days, not coming in to check on how I was doing until the fifth day. On the fifth he quickly discharged me refusing to treat me outside of the hospital.
The neurologist who treated me after my initial diagnosis was no benefit when I was in the hospital for my first relapse in 2011, because he was three hours away and suggested that I needed to find a local neurologist. After leaving, I took it upon myself to find a doctor relatively close to home, since all the neurologists that were local clearly were not going to treat me. Luckily, I did find a doctor closer to home who issued me IVIG’s three times a month for three months, as well as re-starting me on a very low dosage of steroid (after trying a very high dosage of steroid, and seeing me get worse) , and properly adjusting the use of my symptom relief medication. It was very important for me to share my story with my new neurologist. A healthy patient-doctor relation developed more of an understanding of my disease and how my disease affects me on a daily basis. When this bond was established, it tremendously helped me cope with the trauma experienced from misdiagnosis. It has also helped her efficiently and proactively treat my disease. I am now very happy to have a doctor that will actually monitor and treat my MG.
Although when reading over the definition of myasthenia gravis, the general public may tend to view one with MG as being tired, perhaps how you feel after a physical event or when one is sick with the flu. I’d like to describe it as a feeling of paralysis, a bus sitting on your chest making one actually force every breath in and out, trying to pull a truck while walking, feeling like it’s an event to eat and swallow without some choking, clearing of the throat, or jaw muscles fatiguing feeling like every meal is a very tough steak. The day in and day out struggle can get very discouraging, especially when one’s condition is ‘flared up’. The feeling is awful and very discouraging when it takes 30 minutes or longer to finish a small pureed meal, struggling to breathe all day long with periods throughout the day worse than others, having to nap often still fatiguing after waking up, a trip to the mall or store may feel impossible, isolation in the home due to the feeling of ‘rest is best’ or ‘I won’t be able to last’, the trouble of keeping a job because as WE know symptoms and severity are unpredictable.
Myasthenia Gravis (MG) continues to keep our medical specialists at hold with many questions, as does many muscle related diseases. Questions such as: Why does MG occur? How can we cure a patient with MG? How does a thymectomy, procedure of the removal of the thymus gland in the chest, play a role with the disease? Why are many patient’s symptoms different and why do some treatments work for some and not for others? Many of the treatments and medications tend to come with side effects that can further alter one’s life. Are these medications helping the disease with no toxic effect and damage to the body? Maybe they are, maybe not. All of these questions as well as many more are questions I personally have about the disease I live with every day. In my advocacy many other patients affected by one or more muscle disease have questions. By joining the Muscle Movement Foundation (MMF) we will grow and pursue finding the answers to these questions.
Technological advancements will continue to develop and positive treatments will be found, not only for Myasthenia Gravis but for many types of muscle related disease.
Yes, it will take time and hard work. One voice will not be heard. When we come together as one, our stories will be heard and our voice will be loud. We will become a strong community and a further push for treatments and answers will be put into play. With the most important strategy of the MMF, ALL of US will continue to live a healthy lifestyle, provide support, stay stress free, give our best, and NEVER give up; and our life will be fulfilled with happiness and accomplishments we may think we could only imagine. WE want you to know that all the mental and physical feelings and symptoms one living with muscle disease experience, is understood by the entire Muscle Movement Foundation (MMF) family. WE are here and you are not alone.”
-MMF Founder/President, Rob DeMasi