Recovering After My First Myasthenia Flare-Up

In case you missed it, check out part 1 of this article, "Dealing with My First MG Flare-Up."

My myasthenia gravis symptoms had finally subsided, and I was doing pretty well. There were a few times I had missed my medication for several days with no adverse effects.

So, along with other observations and tests, my neurologist deemed me in remission and she weaned me off my myasthenia medications.

As discussed in part 1, I had no symptoms of myasthenia for about 2 and a half to 3 months. I felt great! However, the symptoms gradually returned. My being in denial became a serious problem, in that I didn’t notify my neurologist, nor did I start back on my medication right away.

Increasing my dosage

By the time I had notified my neurologist and resumed my medication, they were not controlling my symptoms. In fact, they were getting worse each day. It isn’t easy to get an appointment with my neurologist, as she was usually booked a year in advance, but I was finally able to get an appointment.

I resumed my medications at the dosages I was on before remission. It wasn’t enough. After about 3 to 4 weeks and no improvement, the dosages were adjusted. Prednisone went from 20 mg to 30 mg.

A few weeks went by and still, no improvement. In fact, I was worsening. That’s when she got aggressive with the dosage and increased it to 60 mg.

Though I was no longer getting worse, it took about 4 weeks before I finally started seeing improvement. Of course, the edema became worse than ever!

My double vision returned

After another month, my eye was finally open all the way! However, my eyes were misaligned, so my double vision returned. This whole time was a nightmare for me and I was trying to work full-time.

I ended up with almost the same symptoms as in the beginning, but much worse. It took another few months to get regulated again before the symptoms subsided.

Comfort from family

All this prednisone caused even more edema. While I was still having symptoms, and at my worst with the edema, my siblings came to visit. They were very worried as they’d never seen me ill like this before.

They had never heard of the disease and didn’t know what to expect. I’m the youngest in the family, they’re all several years older than me. They look out for their baby sister with a passion.

It was great having them visit. Though it created more work for me hosting them and our adult children (and young grandchildren), it was wonderful for my emotional state.

We hadn’t seen each other in a few years, so it was a very nice visit and actually helped me relax. The difficult part came when they all had to leave and go home.

Finding ways to relax

I think that visit from my brothers, sister, and 2 nieces did me a world of good. That emotional "feel good" seemed to help me physically, too. I wasn’t as stressed as before, and I just felt more relaxed.

There are many things that come along that seem small but turn out to be a catalyst to begin healing. After that visit, I started to improve.

Thanks to my family, my flare-up was becoming controlled again. Whatever it takes, find things that help you relax emotionally. It really does help!

Do you have an MG story? Click the button below to share with our community!