Patient Stories

 Everyone  has a story. Each and every one of us has lived such a different  journey. We all can give a chronicled account of our life, a reflection  of what we have encountered, how we have embraced those experiences and  what we have learned. If we simply view it in a simplistic manner than  we unknowingly get stuck in the story, and never fully embrace what the  journey is all about. 

Here is my story, my narrative account: This  September it will be exactly 32 years since my first encounter with  Myasthenia Gravis, MG. I was awakened one morning to the most unusual  world, a total shift in my visual reality. I awoke one day with a major  shift in my vision, a visual discrepancy that in a blink of an eye never  changed. At first I thought I would literally go mad, as it was so  arduous and intrusive to my life. But, as life teaches us, we can choose  to resist it and fight it, or go with the flow and accept it. I chose  to accept it. Helen  Keller, one of my most admired and awe-inspiring authors, led me from a  dark place to the light. Her spiritual engagement with life, her  uplifting and inspiring attitude taught me so many lessons about  embracing the unknown, moving beyond any circumstance with strength and  perseverance.  We can choose to sit in darkness, or we can move to the light and embrace those shadows. I chose the light.

 From  there I noticed many symptoms that would move in and out of my daily  life like the ebb and flow of the ocean. I was affected by many outside  changes to my body from my eye drooping, severe and unrelenting fatigue,  chronic muscle weakness, difficulty standing and walking, loss of  balance, difficulty swallowing and breathing, choking in my sleep,  memory and cognitive issues and more. With the initial onset of these  symptoms I was diagnosed with Multiple Sclerosis, later to be retracted.  Even though I went to various neurologists, I was only diagnosed 3  years ago with MG. Myasthenia Gravis awakened me to how to appreciate  life. Within  every situation there is a seed of good, no matter what the  circumstance is. Our minds are powerful creators, and when we  continually focus on the compounding aspects of any challenge we become  overwhelmed with the adversity. With that, we now take the never ending  cycle of the physical, emotional, psychological and spiritual pain, and  we compound it and create a place of being a victim. That place creates  suffering. Do you really want to suffer? So, how does one learn to deal  with the many aspects of any adversity? 

I  am fortunate that my husband, Gary, is a life and mindset coach. With  his mentoring and my ongoing studies, I have been able to see the ‘seed  of good’. That is not to say that I never go to a place of sadness or  concern, I simply choose not to stay there. The best analogy I can  describe in this circumstance is to think of a ladder and its rungs. You  cannot go from depression or sadness to happiness and joy in one step.  It is one step at a time. So, how do I get there? I pay attention to all  the subtle nuances in life. I open up my journal and write down what I  noticed for the day, the light streaming through my living room or a  butterfly fluttering about my garden. Often it is the simple things in  life that bring us such peace, harmony and joy.  Also,  I have found that when I am busy giving to others, the lightheartedness  of giving unconditionally, pure from the heart, it lightens my pathway  with joy and my burdens feel so much smaller. Be so busy giving that  your troubles become small, and your love for others transcend  everywhere, a reflection right back to you. Every time you touch  someone’s soul, you have enlivened yours, awakened love everywhere. Gary  has been a source of inspiration, a guiding light to show me the  advantages of using effective listening tools. Over time I have learned  the difference between being an active listener and wound bonding. In  wound bonding the other person shares their story. We may think we are  showing empathy, but in reality we are simply comparing our stories, a  very ineffective way to listen, to show compassion and empathy. To be an  active listener: simply be available, be quiet, listen, reflect back  what you heard and validate. 

Be sure to ask them if there is more. It is  not about fixing the situation. It is not about you. It’s about the  other person. This tool is so important for the person dealing with MG  or any situation, and for their friends, family members, and caregivers  to actively use it. Taking it a step further, it is vital that the  person that is dealing with the fluctuations of MG or any adversity  allow the other person to open up about their feelings. It is so  critical. We often forget that our caregivers are hurting too, and the  compounding affects any condition or disease will have on others. To  receive understanding, compassion, empathy and love, you have to give it  too!

 During  the times I fall down emotionally and spiritually, through the grace of  my beliefs and relationship with God, I feel renewed again. Without  hope, we yearn for things we desire, perhaps to recapture the place we  once were totally healthy and fall short in our faith and create that  victim mentality. If we lead with hope then we have a sense of wholeness  that all things are possible. I am a hopeful romantic about life, all  aspects of life. I believe that all things are possible. Even if I never  go in remission, I am led to create the best possible life with  whatever my day may bring. Here’s to celebrating life! 

Caryl Loper

 Early  in 2008, I started experiencing symptoms of MG. I have a mild/moderate  case of MG so the symptoms began occurring infrequently. Because I was  unaware of what MG was, I was also unaware of the symptoms and may have  been experiencing more than I actually remember. My symptoms became more frequent and I finally went to  my doctor. He took one look at me and sent me with an emergency  referral to a neurologist. Whether luckily or unluckily, I was diagnosed  with MG in the summer of 2008. I say that I was lucky because MG, like  other auto immune diseases, is difficult to diagnose. I happened to test  positive for the Anti-MuSK Antibody Testing which guaranteed my  diagnosis. Unlucky because, well, I now knew that I had a chronic  disease with no cure. 

I am now on medication {that I have to take everyday}  and am pretty stable. I see my neurologist once a quarter. If not on my  medication, I can barely keep my eyes open, have occasionally had to  pull over because of blurred vision, sound like Elmer Fudd, have so much  difficulty chewing and swallowing that I immediately lost 20 pounds,  have arms so weak that I have to rest from blow drying my hair and  sometimes experience so much fatigue that I cannot get out of bed. One  of the things that affected me the most is that I felt as if MG had  stolen my smile. Because it was so hard to smile, I would often make “funny” faces in photos so that I wouldn’t look awkward.  I  would get upset because I knew that I couldn’t smile and my husband  would say, “Make a funny face!” because he knew that was easier for me. 

I have now been dealing with my disease for five years. I have had to make major  changes in my life. I have had to really listen to my body and do what  is best for me so that I don’t crash and burn in the future. I have made  plenty of mistakes. I have messed with my medication and paid  the consequences. I have had to deal with the side affects of the  medications. I have had to miss out on important things because I can’t  move. I have tricked myself into believing that I am okay and have gone  backwards in my symptom management. But I have also really gotten to know myself: my body,  my capabilities, my capacity, my resilience. Because I am experiencing  this on a daily basis, I have learned that I don’t want to miss out on  life.

I don’t want to have any regrets. So I am forced to live a life of balance, which I am finding is a good thing. And I have found my smile again. 

Leah Nash

 October 2012 was one of the happiest times in my life. I had just  married the man of my dreams in September. We had a wonderful, relaxing  honeymoon and I was floating on cloud 9. I remember during this time the  way I pronounced my words seemed “different”. I was having an issue  with my wisdom tooth so I assumed this was the cause. Shortly  thereafter, my speech was completely slurred. I scheduled an appointment  with the oral surgeon (still thinking it was the tooth). When I told  the oral surgeon about my slurred speech, he refused to extract the  tooth. He suspected Bell’s Palsy. He wanted me to get it checked out.  I’m glad he did.

 Over the next few weeks, my symptoms progressed fairly  quickly. Slurred speech was accompanied by difficulty swallowing,  weakness in my eyes, difficulty chewing, weakness in my neck and  shoulders. I made countless visits to my primary physician and the ER. Finally,  they diagnosed me with anxiety. That’s right; anxiety. My symptoms were  “apparently” the result of stress and I was referred to a psychologist  and given anti-depressants and Xanax. Hmm, how can this be stress when I  am overwhelmed with happiness? I’m a newlywed for goodness sake! I knew  deep down that what I was going through was not the result of stress.  Something was wrong and I felt like nobody was listening to me.  I received a referral to a Neurologist and had several MRI’s and CT  scans. In my mind, I was hoping for an answer, but I really didn’t want  to know. I felt that whatever they found would determine my fate. God  became my best friend. He gave (and still gives) me a sense of peace  because I know that he protects me. The neurologist decided to give me  muscle relaxers (big mistake). She could not pinpoint what was wrong. I  kept a journal of everything I was experiencing. Every time I pulled it  out to explain my symptoms, I felt like I was being dismissed. I was so  proud of myself for keeping a journal. I thought this information would  be helpful for doctor’s to figure out what was wrong with me. Their response made me feel as though I was burdening them. 

Finally, the neurologist suspected MG and had me do the blood work. I  worried and worried and worried some more. I was scared of MG. As I  read about it, I automatically assumed that a surgeon was going to split  open my chest to remove my thymus gland. The test results came back and  I got that fated call. “Good news! You don’t have MG. There is nothing  more I can do for you so I’ll refer you to rheumatology”. I just want to know what is wrong with me! Somebody help me please!  Of course, the rheumatologist drew thousands of tubes of blood to  test. At least that’s what it felt like. And of course, nothing was  found. She referred me back to neurology and guess what else she said?  You guessed it. “Maybe you’re just experiencing stress.” Would I never  get my answers? I faithfully met with the psychologist. She taught me deep breathing  techniques and ways to relax my mind. Thankfully, the psychologist must  have a medical doctor sit in on the counseling sessions. The medical  doctor knew something was wrong. She decided to put me on 60mg of  prednisone for 1 week. After day 2, my symptoms were clear. Yessssss! I  can speak, I can swallow, and I can chew! This doctor was a God send. She knew it was something autoimmune and told me to contact her if my  symptoms clear up. I was symptom free for about 3 weeks. Then, the  symptoms slowly started coming back. I received prednisone again. They  cleared up, but not as much as the first time I was given a dose of this  demon drug. Eventually, all of my symptoms came back, this time with  full force. Only this time, I now was able to see two of everything.  Cool, right? Not! Imagine driving with double vision and not knowing  which lane you’re in. I was hospitalized again. The neurologist in the hospital was positive it was MG. I told her  that I was tested and that I didn’t have it. She requested my records  from the initial neurologist. She was overly ecstatic when she told me  that I did in fact have MG. I must admit that I was happy too. I finally knew that what I was experiencing had a name.

 It was not stress, it was Myasthenia Gravis. She thoroughly reviewed  the results of my initial test. She pointed out that I was MuSK  positive. The first neurologist missed this. Do you mean to tell me I  could have been diagnosed for 4 months, but she missed it? I immediately  started on high doses of Prednisone (100mg) and CellCept. I remained in  the hospital for 1 week. I was discharged on a Saturday and ended up  back in ER on Sunday. Apparently, I developed the flu and this  exacerbated my symptoms. I was treated for MG. This time with IVIG and  was give Tamiflu for the Flu. Another week in the hospital went by. I  was discharged and found an outpatient neurologist to follow up with. My current neurologist noticed that I still had some weakness after  my bout with MG and the flu. He decided that I needed plasmapheresis. I  did this for 5 days. It took several weeks for me to regain my energy. I  felt much better once I did. Finally, my MG was under control. Then  life hit me with another curveball. I had a near death experience when I  almost passed out due to having 4 blood clots in my lungs. Fast  forward, no clotting disorder was ever found. My hematologist was only  able to conclude that the prednisone thickened my blood and caused the  clots. I am on blood thinner for life. 

My MG is in remission. I still  suffer from fatigue, but I am an MG warrior! 

Tashana Siller 

MG Hope: " What is Myasthenia Gravis to you?"

Tyler M : " Myasthenia gravis is a neuromuscular/autoimmune disease that affects the way I  walk, see, smile, and breathe. It is a disease that completely changed  my life in both good and bad ways. It not only affected my physical  being, but my emotional and mental being."

MG Hope: " How has it changed your life both positively and negatively? "

Tyler M: " MG  has changed my life in many ways, both positively and negatively. On  the negative side I struggle with daily tasks, I’ve lost friends, and I  can no longer do things spontaneously. I struggle with walking quite a  bit and use a cane. Most of the friends I had before I became ill slowly  faded out of my life. They just don’t understand MG and what it’s like  to live with a chronic illness. They expect me to be able to do  everything I used to do and I just can’t. That has been difficult for me  at times. I would love to be called the day of and go do something with  friends or just hangout, but I can’t really do that anymore. Everything  must be planned out, is it an accessible place, are there  stairs/elevators, will I have to walk far, will I have to stand or sit  for too long, can I drive there (how far is it) and is there handicapped  parking?  

 On  the positive side, I have met so many wonderful people that have been  extremely supportive and helpful with my questions. I have gained access  to what sometimes feels like an exclusive club, the MG community.  Another positive thing is that I’ve slowed down (against my will) both  literally and figuratively, and have learned to appreciate the little  things in life. I’m so grateful to have met such wonderful people that  not only understand MG, but understand me too, like my online friends,  but also some friends from college. They’re the best. Do I wish I wasn’t  sick? Of course, but would I change my experience? No." 

MG Hope: " MG hasn’t kept you from pursuing a college education. How do you make that work for you?"

Tyler M: " Before  my diagnosis, I had started my undergraduate degree, a BS in Computer  Information Systems and Technology. I was a very active member of my  campus community, participating in various activities, being president  of our LGBTS Alliance, serving as an orientation counselor to incoming  students for a few years, working a work study job, and taking 12  credits (full time) per semester.    

 While  trying to get diagnosed, I was stuck using a powered scooter to get  around our campus, even though it is tiny compared to most. My grades  slipped a little and I had to withdraw from most of my courses, but I  stayed in school throughout it all. I was determined to finish what I  had started, taking just 3 credits a semester in an effort to get the  120 credits needed to graduate. I was also still in my work study job,  however I soon had to quit as I couldn’t make it to work much and do one  class a semester.  

 After  my diagnosis, I’m still in college part time taking 3 to 6 credits a  semester. I do receive accommodations and my professors are usually very  understanding of my illness. I ask for leniency with attendance and  occasionally extensions to get work done. I live on campus with an  amazing roommate. He’s very understanding and accepting of my illness  and me in general. He does a lot for me, including cleaning the dorm  (most of the hard work), and taking out the trash and recycling as I  can’t carry it long enough to get to the dumpster/recycling bins. While I  have slowed down quite a bit, I’m still president of the LGBTS Alliance  which is often a lot of work, but my fellow officers are very helpful  and often take over when I can’t be at an event or meeting. I’m also  part of a diversity committee to the president of our campus and have  been since it was formed in 2013. While I occasionally need my powered  scooter still, many days I get around with just my cane. Overall college  is a lot of work, but I’m determined to finish what I started and that  determination is what drives me to keep going."

MG Hope: " What advice would you offer someone else with MG who is trying to achieve their dreams in spite of it all?"

Tyler M: " My  advice would be to take it slow, know your limitations, and ask for  help whenever you need it. I understand that may take some time, but I  personally believe it is necessary in order to keep going."

MG Hope: " What do you wish others understood most about MG and your life now?"

Tyler M: " I wish others understood that I am not the same person I was before my illness. Any  chronic illness can change your entire being. I wish they understood  just how difficult it is to be exhausted all the time, to be weak most  days, and still have to function. I wish they knew the fatigue that  comes with myasthenia gravis and the fact that it is a chronic illness  that is not going to go away."