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Myasthenia Gravis - Welcome to My Life.....

Posted Oct 09 2012 8:30pm
Myasthenia gravis is my new best frenemy. I was just learning how to be peaceable with lupus after 10 years and this bomb is dropped on me.

How things developed........

For a few weeks I was having some minor trouble swallowing. It wasn't anything that made me want to go to the E/R. I figured I would mention it at my next doctor's appointment.

Other non-urgent issues were........waking up at night because I was coughing, although I didn't feel ill; trying to drink water and ending up coughing and spitting it out (that actually made for some good laughs!). One day though, I started having issues speaking. Just couldn't make my mouth form the words that I had in my mind. Thought I was having a stroke. Went to the E/R. They did some testing of my ability to walk, lift my leg, touch my nose, etc. Since I couldn't really operate my left arm and leg the way I wanted to, the E/R personnel also thought I was having a stroke. Upon further examination though, MRI, CT scan, etc. I didn't have a stroke. What was the problem then? After 3 days in the hospital, I didn't know. Maybe stress or anxiety or lupus causing funky symptoms.

I follow up with my neurologist and he mentions that there's one test that they didn't take at the hospital. I see him in a few weeks and the results are in and positive.

Acetylcholine Receptor Antibodies.

That's a mouthful and a disappoint. I was hoping it was something temporary and/or already existing. Definitely not thinking I had a new issue going on.

The saga continues.......

He refers me to a myasthenia gravis specialist. About 4 days later, my body decides it can't wait for the specialist appointment. I can't swallow at all. I'm having blurry and double vision. I'm dropping things because the muscle in my left arm can't hold onto objects for as long as I need. I go to the E/R, get admitted again. Stay in the hospital for 6 days this time for more testing and to start treatment.

It's official now.

I have myasthenia gravis and I have to learn to live with it.

It took me a while to even write about this.

My next post  will be about how I actually feel about it......

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