My Wild Ride
I was diagnosed with myathenias gravis in September of 2022. I presented with shortness of breath while doing water aerobics. Sounds crazy but I am an excellent swimmer. To feel like I was drowning was a scary experience.
What was happening?
Heart failure was investigated but my heart is just fine. Next came ptosis and that clinched it. I was confirmed by a blood test that it was MG. I am so thankful I did not have to endure months and years of testing for the wrong conditions.
My primary doctor admitted she had never had a patient with MG and recommended me to a neurologist. So I called and found that it would be six to eight months for an appointment. I live in St. Louis, Missouri and thought surely there is a neurologist I can see sooner than that. I called every neurological group associated with a hospital within 50 miles of my home. I made appointments no matter how far out they were. But, I also added my name to a call list for taking cancelled appointments.
Getting my answers, finally
I received a call for a cancellation on January 3, 2023. So I waited for four months. But I threw on my coat and headed to the appointment. I was fortunate that the doctor actually was a specialist for MG. I had no idea how rare this disease is and how few neurologists know how to treat it. I began Vyvgart infusions and Mestinon and went for a CT scan .
The CT scan was positive for a thymoma . So it was decided the thymoma had to come out as soon as possible. I was referred to a cardio thoracic surgeon who by the Grace of God was a specialist in removing thymomas. The Vyvgart infusions had no lasting effect so I was hospitalized and began IVIG infusions.
Things got worse fast!
Meanwhile , my symptoms are multiplying at a very fast rate. I was not able to hold up my head and wore a cervical collar. I had double vision so bad I wore an eyepatch. My arms would not raise above my shoulders, my fingers were frozen, and chewing and swallowing became difficult. I couldn’t sit up from a laying position or dress myself. My surgeon said there would be no surgery unless I was treated aggressively. I would not survive the surgery.
Surgery time...or so I thought
Come February and I am now in full blown crisis. Hospitalized a second time but the neurologist is thinking I’m actually in a coloragenic crisis caused by overdoses of Mestinon. I am now to begin plasma pheresis. I am admitted to the hospital again for 10 days receiving plasma pheresis every other day. I did respond very well to the plasma exchange and was released to have my last two exchanges at an infusion center. Surgery is now a sure thing and I am days out from the surgery.
Then comes April, and I have some mobility back. The infusion center could not get a line in that was large enough to accommodate plasma and I was there two hours trying to have lines put in my arms. The central line in my neck had been removed. I was there two hours repeatedly being stuck.
Finally, I could feel my breathing becoming labored. Paramedics were called and off I went to the ER. Eleven hours later I was readmitted to the hospital where I went into a catastrophic breathing event. I was intubated and put on a ventilator.
Let's try this again
Five days later the surgeon decided I was already ventilated and was stable so the surgery went ahead. I had robotic surgery to remove the thymoma that was cancerous but encapsulated. Two days later I was removed from the ventilator. I’m breathing on my own, very weakly, with a feeding tube. Slowly I’m improving with none of the weakness of MG. I’m receiving pulmonary therapy, PT, therapy for chewing and swallowing.
Early Sunday morning, April 23 I was released from the ICU to go directly home. I’m in a remission now. I have foot drop and am wearing a brace, and I have shakiness. I have shortness of breath on exertion and fatigue. I’m on steroids and low dose of Mestinon.
Where I'm at now
It’s been a month since the surgery. I’m healing up just fine. I’m walking short distances and receiving at home therapy for PT , CT, and wound care. I have been approved to begin seeing a new specialist for MG through the St. Louis University Hospital. It is a clinic specializing in patients with MG. I’m very hopeful this will help me maintain my independence.
I consider myself very fortunate to have survived this traumatic event. I have so much to learn about my triggers and how to live my life with MG. I also am seeking help with my emotional health. The events left me anxious which I know is a trigger for symptoms. I am not discounting any therapy. If it helps me learn to live a more fulfilling life I’m accepting it. I pray all of you will find the help you need. My new mission is to provide support and encouragement to anyone that needs help with an autoimmune disease. I am here for you.
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