As part of #MyastheniaGravis Awareness Month I would like to share my story with you.
It is long story, but I will do my best to summarize it. 🙂 I fell ill in February 2012. I had flu like symptoms, fatigue and then a sudden inability to walk and shortly after to use my arms. Doctors ruled out issues with my back and then diagnosed me with encephalitis. Hindsight is an ironic gift. Looking back it seems obvious that I had #MyastheniaGravis considering the generalized weakness I experienced. Unfortunately it took almost 2 and a half years for me to be diagnosed. In 2012 I was in and out of hospital being treated for encephalitis and drastically over medicated. I
even went for a second opinion and the neurologist stated that according to the tests I never had encephalitis and that is was just stress.
Worst response ever! Never tell a chronically ill person that is undiagnosed that it is just stress! As a doctor you are just too lazy or biased to look for the answer. I was left very confused and wondering if I made myself sick. In 2013 I spent more time in hospital, but decided to change to a new neurologist as I believed mine wasn’t trying to get to a correct diagnosis. I knew something else was wrong. You should always trust yourself. My new neurologist is still treats me to this day and is phenomenal. She new it wasn’t encephalitis, but it took a another year for her to pin down my diagnosis in 2014. When my neurologist noticed my eyes drooping – a tell-tale ocular symptom of #MyastheniaGravis – she finally knew what was wrong. Eureka! She performed all the necessary tests and although I didn’t test positive for the acetylcholine (ACH) antibody – i.e. I am seronegative – the diagnosis was confirmed and treatment began.
I responded well to treatment initially, but I soon started to get more ill. By that time I had left work and was on disability from mid 2013. I was also misdiagnosed with Lupus. (Pheww, I was glad to not have that too.) It turned out to be #Fibromyalgia and #SjogrensSyndrome. I didn’t respond well to immunosuppressants and we changed several times. I was however on the life-saver Mestinon and cortisone. Moon face ensued. When then tried intravenous immunoglobulin (IVIG), which initially seemed to work. This didn’t last. My disability insurer wanted me to attempt a part-time return to work trial in 2015. I started working half day and relied on IVIG treatments that were less and less successful. After 7 months the work effort and stress got to me. I went into a Myasthenic Crisis and stopped breathing in the night.
I would have died if my dogs hadn’t noticed a problem with my breathing and stood on top of me to wake me up. (The husband was blissfully asleep. :)) I obviously stopped work again and have been on disability again since that. And so 2 years of hell started as I tried to recover from my Myasthenic Crisis. I started plasmapheresis every six weeks, which meant a 5 day hospital stay every time. I had countless painful and failed surgeries to create a fistula for my plasmapheresis. It was horrible. I cried my time away in hospital and remained so weak for a long time that it just seemed I would never get better. After a year and a half I stabilized and my new goal was to get ready to walk down the isle and get married. It was difficult with a lot more treatments, but I got there. In March 2018 I got married to the man of my dreams. (And yes there are special men out there that marry wonderful sick women.) I am still not working and on disability.
As I write this my health is more stable. I still go for plasmapheresis every 2 or 3 months, which is much better than every 6 weeks. I still don’t respond to immunosuppressants and thus have refractory or difficult to treat #MyastheniaGravis I also had to stop cortisone as it was ironically making me weaker. Good by moon face! Life is better though. I take good care of my health as I want to avoid the hell that is a Myasthenic Crisis. I am also hopeful. We are fortunate to live in a time of tremendous medical development and there are new drugs in the pipeline that could work miracles. (I might be a bit optimistic there.) I am thankful to be alive and although this is not the life that I would have chosen for myself I have accepted it with the good and bad and learned to love it and myself.Never loose hope and keep fighting. It is worth it. XO
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