Dealing with My First Myasthenia Flare-Up
Last updated: May 2023
Most of us who live with myasthenia gravis (MG) will experience a flare eventually. I’ve had some minor flares since my initial diagnosis, but they usually last for a very short time.
However, the worst one I had occurred when my neurologist mistakenly thought I was in remission because all my symptoms had disappeared for several months.
I had even missed some medication doses at times and had no difficulties as a result. Unfortunately, I may not have been in remission ... or my MG came out of remission.
Because my neurologist thought I was in remission, I was told to stop taking all my medication for myasthenia. Needless to say, I was elated.
I had been on prednisone for some time and had a good case of edema all over my body that just kept growing and growing.
So, I gradually weaned off the prednisone and Pyridostigmine per the neurologist’s instructions. Everything was going great, but I was advised to keep my medication around "just in case."
A moment of freedom
I was finally off all the myasthenia drugs. After about 3 more weeks, I was feeling wonderful. I had no breathing issues, no fatigue, no brain fog, nothing. I felt free again!
I wasn’t tied to a specific diet anymore because of the Pyridostigmine, and being off the prednisone, the edema was slowly decreasing. Life was becoming good again.
Well, it wasn’t meant to last long. After doing great for about 2 and a half to 3 months, I started feeling a little tired at times.
I guess I was in denial as I didn’t really connect the fatigue with myasthenia, though I should have. I knew better. The fatigue wasn’t bad at first but it gradually got worse.
After a little more time, I noticed a minimal ptosis in my right eye (eye lid droop). Still, I was in denial. I was in remission, it was supposed to last longer than that. I was just tired. Wrong. I was tired, but there was more to it than I was willing to admit.
I was stubborn
By that point, I should have contacted my neurologist ... but I didn't. I thought, "I’m a nurse and I know better." But you know what they say about doctors and nurses, they make the worst patients!
Still, that and my knowledge of the disease did not convince me to follow up with my neurologist. Looking back, I realize just how stubborn and stupid I was.
A few days later, I could no longer deny the symptoms. Now I knew, my husband knew, and my children knew, myasthenia had reared its ugly head yet again.
I contacted my neurologist right away. I was put back on the drugs at the same dosage I was on when I started tapering off, but it was too late.
My symptoms got worse
We are still not sure if I was actually in remission at the time my neurologist said I was, but the symptoms sure returned quickly and severely.
I was back on my medication for a week or so, but my symptoms were still getting worse. The ptosis was complete. There was no more minor drooping, it was completely closed again. My breathing had become difficult again and the fatigue and weakness was worse than ever.
...To be continued.
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