A Glimmer of Hope
In October of 2020, I was officially diagnosed with what my neurologist said, "for now we are calling it seronegative myasthenia gravis." He also believed there was something else going on.
The month before I was diagnosed, he had run the blood test and also started me on a trial Mestinon. Within a half-hour of the first dose, it was like I was a whole new person. My eyelids were not sagging and I could move freely again.
I had to quit my job
When I experienced a big flare in December of 2019, it wasn't majorly bad. I did need a walker and a neck brace for a couple of months, though by that time, my eyelids had been sagging for a few years on and off again. But it was reasonable.
I could do everything I needed to do, including drive, and I had just started a new job at the same time as I started on the Mestinon. I was hired for full-time, 40 hours. I was on my feet and going all day. Usually averaging 50 hours a week.
But in December of 2020, I ended up in the emergency room with bronchitis. I was given an albuterol treatment there and sent home with a prescription to fill the next day. Between bronchitis, and now the new flaring of the myasthenia gravis, I had to quit my new job.
An emergency room visit
A month later, while at my neurologist's office, I was very weak and unable to breathe. He had me do a breath count it was 13 breaths per minute. He immediately sent me to the emergency room.
In order to start emergency intravenous immune globulin (IVIG) treatments, I had to go to a larger hospital as that treatment was not available at my local hospital. I was taken by ambulance.
Before I had IVIG treatments they had to do a repetitive nerve study. However, because I tested negative, they refused to do the IVIG treatments. Although they did put down a diagnosis of a seronegative myasthenia gravis exacerbation from their specialist, they still sent me home, unable to breathe.
My neurologist immediately started me on prednisone and Cellcept. He continued looking for somewhere to get IVIG treatments as he wanted them for 5 days straight with a hospital stay.
I still have not received IVIG treatments.
Waiting for teatment to work
When is it going to end! As with all things myasthenia gravis, it can be a rollercoaster ride. Ever-changing minute to minute, hour to hour, day to day.
From falling, not being able to breathe, swallow, or see well ... to waiting for medications to start working, it was getting a little overwhelming.
On top of that, I was already living with type 2 diabetes and had to go on 2 insulins because of my medications. It's now the end of July and I have not had much relief. The Prednisone had helped but not enough.
Trying to stay positive
Trying to stay positive and do what I can throughout the days helped. But I'm now no longer able to drive and have struggled with bladder and bowel control. Keeping house is also out of the question.
On the flip side, I do have good days. I talk about them in my article Country Life with Myasthenia Gravis. It was a good day when I wrote that!
Using the inhaler
At the beginning of August, I was still having breathing issues. Out of desperation, I tried the albuterol inhaler again, and it seemed to help. I used it a few more times finding relief.
I currently use the albuterol inhaler with a new prescription from my doctor. I may have still had some bronchitis! I'm not quite fully back to myself, but things are looking up greatly. My medications are working.
Have you found it difficult to discuss your diagnosis or symptoms with loved ones?