What I Didn't Know
I submitted a story in January about being angry and sad due to losing my independence. I mentioned I read everything I could find on Google and joined every organization related to MG. But, reading and joining did not prepare me for several MG events.
No response to treatment
In February I began getting Vyvgart infusions and took Mestinon five times a day. The lasting effects of Vyvgart were very short-lived so Vyvgart was discontinued.
I was getting much worse every day. I couldn’t hold up my head, had shortness of breath, ptosis, and no arm strength. So I was sent in for IVIG infusions.
I received two infusions and then was sent home. No lasting effect occurred.
Then, a crisis
I was losing my speech now, couldn’t chew or swallow, very weak and exhausted. I was then admitted to the hospital where it was determined I was having a cholinergic reaction to Mestinon.
Basically, I overdosed on Mestinon. I tried adding one extra pill before bedtime to get out of bed and use the toilet. Apparently, that pushed me over the edge. I got a little better in the hospital and was sent home.
Trying another treatment
I saw my thoracic surgeon about removing a thymoma from my chest. This doctor recommended to my neurologist to start me on heavy doses of plasmapheresis. I was then admitted to the hospital for ten days receiving plasmapheresis every other day.
Six rounds were given when I am released and I was told to get two more rounds the following week. I was much improved after the plasmapheresis so I go to get the last two rounds but my central line had been removed.
Another crisis...
My veins collapsed and after hours of needle sticking I finally began choking and feeling exhausted. I’m then sent to the ICU at the hospital where I am to get my surgery in six days.
After eleven hours of waiting I’m given a bed in ICU. It’s 1 a.m. now and I’m feeling pressure in my throat. I can’t lie down. I need a port put in but I can’t lay flat so the doctors put a port in my groin. I’m being prepared to be moved when I find I can’t breathe at all.
...and a thymectomy
I pass out and five days later I find myself intubated and on a ventilator. According to my husband, I went through two more plasmaphereses and had an MRI. I have had successful thymoma surgery.
I’m on a feeding tube. I am highly sedated for two more days when the ventilator is removed. I am breathing on my own, sore from surgery, but I’m alive. I can swallow again so eating a meal is next.
My recovery
Test show I can swallow so I have soup. I’m up walking now, but still in ICU. Three days after the ventilator is removed I am released from the ICU to go home. I’m feeling so much better I begin physical therapy at home.
My neurologist tells me I am still reaping the benefits of plasmapheresis. The symptoms will return but not all at once. I am to begin Vyvgart again as soon as the insurance approves it.
What I didn’t know, or what I learned is, it’s easy to overdose on Mestinon. When you can’t sit up, get out of bed, chew or swallow, can’t hold up your own head, you are way past a flare and well into crisis. Get to a hospital.
My advice
Advocate for yourself when you feel yourself declining during a procedure. Speak up! Stop the procedure. Have your medical records with you.
ERs don’t have a clue about MG. They will have you taking all kinds of unnecessary tests. You or your caregiver should call the neurologist. ER will not call your neurologist. They use the doctors in the ER.
Ask any neurologist assigned to you if they know how to treat MG. Be prepared to have them say no. Be prepared, advocate for yourself, and don’t wait til it’s too late to get help.
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