First Crisis very Frightening
I was diagnosed with myasthenia gravis by my quick-thinking GP back in 2016. It was the sight that was my main concern. I was anxious about not being able to drive with having double vision and reading, watching tv etc. We’ve all been through it. Fear.
I was referred to a neurologist who properly diagnosed the condition and I was promptly put on the dreaded Prednisone (60 mg), Mestinon (60 mg) and mycophenolate (500 mg). I was on many pills per day and on a gradual tapering off of Prednisone and Mestinon, while staying on mycophenolate for some time.
By the end of the treatment I had blown up like a balloon, suffered terrible leg cramps constantly and also had cellulitis and edema in my legs. Not pleasant. I thought to myself, "what is my life all about now?"
A hard journey
The following year just when I was getting sort of back to normal, my beautiful caring husband had a heart attack and passed very suddenly beside me. This sent me back a bit but I was determined to be independent and not rely on my children to run after me. I noticed that coming off Mestinon stopped the cramps almost immediately and my weight fell dramatically when no Prednisone was taken. Eyesight returned. All good.
April of this year, I woke up and was unable to swallow. A few days later I found my speech was slurred and my tongue wouldn’t do the job of moving food down my throat. Panic. I didn’t know about a flare up, crisis, or what was happening to me. I visited my neurologist who said it wasn’t my MG, but sometimes a speech pathologist can have success with this.
After many tests ordered by my GP, like a brain scan in case I’d had a stroke, I was all clear. Then a neck scan - all clear. I was taken into hospital for a 5 day treatment of IVIG. I have been put on a low dose of Prednisone and Mestinon (no cramps) and mycophenolate and I feel great.
I am home again after 2 weeks feeling in the pink, driving, reading, managing my housework, cooking etc. without the aid of a speech pathologist. I did have to endure pureed food for weeks as swallowing was really difficult. But that’s done and dusted so I am very happy.
Just one more thing. I have only had decaf coffee and tea since first diagnosed as per my neurologist instructions, and I must say I notice it when I drink full strength beverages. Long winded but had to vent. - Christina
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