Lindsay's Story: A Myasthenia Gravis Journey from Despair to Hope
Just imagine this: You are a twenty five year old woman, thriving in your career as an emergency department nurse, going back to school to become a nurse practitioner, getting a brand new apartment and a new puppy! It’s the start to a pretty amazing story of a young woman’s life journey.
In my case, this turned out to be the start of the kind of journey I NEVER could have imagined.
My name is Lindsay Alpert and I am thirty-one years old. This is my journey and path to my diagnosis of a rare chronic autoimmune neuromuscular disorder, Myasthenia Gravis.
Questions and Puzzling Changes
I first noticed symptoms in the summer of 2015. My symptoms were very minuscule in the beginning but started to increase so I attributed most of them to stress, anxiety, and working a full time night shift as a nurse in an ER. The symptoms were so bizarre and straight up silly to me: I could not hold up my hair dryer to dry my hair as my arms would get completely exhausted. Simple things like sucking out of a straw was such a struggle. As a nurse, simple tasks like opening up a vial of medication or opening up a fluid bag were suddenly my hardest. I could only type with two fingers at a time. When giving a report on my patients my voice would slur, and become more nasal the more I would speak.
Lindsay’s MG symptoms made it difficult for her to do basic things, like smiling
As time progressed, my fellow nurse colleagues began to think I was sick with a cold. I had trouble chewing foods like sandwiches, bagels, and basically anything with a tough consistency. I almost choked on my food multiple times. And the worst, by far, was the inability to smile. My facial muscles were so weak I could not smile or make facial expressions.
I was overwhelmed. Why was this happening? The harder I tried to carry out my normal everyday activities the more I struggled. Is this all in my head? I am a strong person! This will go away. I just need to eat healthier and get more rest.
But it didn't go away, in fact it got worse. I spent about 6 months of visits to my primary care doctor and my ENT(ear nose throat) specialist. I received multiple tests, including blood tests, speech, and swallowing tests, and tried speech therapy until I was finally referred to a neurologist. This referral took about 3 months.
At this point my mental health had taken a complete turn for the worst. My symptoms had amplified my anxiety and social anxiety. I felt isolated and I did not want to go out and do things with friends. I was too weak and needed to conserve my energy so I could still show up to my job as a nurse. I was also embarrassed to be around people and to eat out a restaurant because I knew I would struggle. As one could imagine, this made me feel very lonely, depressed and shut out from the rest of the world. I was not comfortable with myself, I could not be my authentic self.
Waiting for Answers
I booked an appointment with a neurologist that could see me the quickest, which was still a 3 month wait. This doctor was very nice and knowledgeable. Gratefully, he was honest and told me he was not sure exactly what was going on with me, but he wanted to refer me to a neuromuscular neurologist specialist. He thought I might have Facioscapulohumeral Muscular Dystrophy. This completely freaked me out, because after investigating this very rare disease it was clear there was no known medical management and patients ultimately end up needing to be in a wheelchair long term as weakness progresses.
As a nurse I had done my own research and had identified the disease Myasthenia Gravis as a plausible match to my symptoms. I asked my neurologist about it and because I was not having ocular symptoms, including droopy eyelids, it really couldn't be Myasthenia Gravis.
For the next 6 months I eagerly waited for my appointment with the neuromuscular specialist hoping for some clarity to my struggles. During this time I continued to do much of my own research and tried to learn as much as I could so I would be prepared and knowledgeable.
This time period was extremely hard for me, as I struggled to just get out of bed in the morning, to get to my car, and to get to work. There were several moments during patient care where I was afraid that my body would give up on me. One day, one of my patients was in full blown cardiac arrest, his heart had stopped beating. As I was doing chest compressions and running around like crazy, the paramedic in the room told me that I didn't look so great. He was right, my body was close to fully collapsing. Despite this, I felt compelled to hide my symptoms and emotions to do my job and try to help save this man's life. My life revolved around work, sleep, and rest-- enough to go back and forth to work. My own health came last.
The Path Towards Healing
When the day finally came to see the neuromuscular specialist he could tell very quickly that I was suffering from Myasthenia Gravis. I was overjoyed with this news, I finally had an answer!
He gave me medication and performed a lot of additional tests. The medication he gave me, mestinon, actually started to make me feel better! The next six years after I was diagnosed was a rollercoaster ride including surgery, hospitalizations, different medications, and different treatment regimens.
I am currently in a great place- at least for right now. In December I started an instagram page (@lindsay_rae_sunshine) to share my journey because I feel it is my duty to give back to people, like me, who struggle with their rare disease and finding the answers to help them live life.
I know this is just the beginning of my journey, but I am a true believer that I was given Myasthenia Gravis because I am strong enough to manage through it. And because I am meant to make a difference and help others.
If you have MG, and want to understand how much muscle weakness affects you to share on your next doctor visit, take the MG-ADL, an MG survey created by experts in myasthenia gravis that can better help your doctors understand your symptoms’ impact on your daily life.
