Moody Myasthenia Roller Coaster Ride

I don't know about you, but for me, the moodiness of myasthenia gravis (MG) just makes it hard to live with. Think about it, 1 moment you are doing fine. Then out of the blue, you cannot see, or your legs do not work. Or possibly, it could be your arms or some other part of your body. We never know.

Most of us do not want this kind of drama in our lives. Just waiting for MG to rear its ugly head is a roller coaster ride and it has a hidden agenda.

Once my symptoms started, they never truly went away. They coexist and trigger other symptoms in their own time for their own reasons. I never know when the next hairpin turn is or how bad it is going to get.

It progressed slowly

I cannot speak for anyone else with MG, but for me, the roller coaster ride started out slow. At first, I was not able to hold a pen and my writing was not always neat. It came along with severe constipation when my hands were not working. Then slowly, very slowly, it progressed.

Shaking and the trembling came next. At this point, the neurologist was sure I had Parkinson's disease. But the treatment for Parkinson's was not working. Therefore, this neurologist suggested that I "needed controversial brain surgery" to see if they could figure out what was going on. Um, no!

Years later, my left leg was giving out and I felt like I was getting a tight band around my rib cage. So tight I could not breathe. I also had double vision, blurred vision, and completely shut sagging eyelids. I also experienced chewing and swallowing problems.

Unexplained brain lesions

The saga continued as they found 1 old lesion in my brain. I was informed by my family doctor that it was multiple sclerosis (MS). Yet, there was not enough evidence for treatment.

My doctor brought up the consideration of being placed in a nursing home for the rest of my life if my symptoms were bad enough. The worst of those symptoms lasted for 5 years. Then it just went back to the randomness that it had always been.

But, out of the blue, it all hit again. This time, it included extremely high blood pressure. New symptoms started coming out and the doctor found 2 new active lesions in my brain. Again, I was told the lesions were consistent with MS. Today, I still do not know what the lesions are from. Neurologists have not been able to identify the problem.

Testing for a stroke

It was not until an emergency room visit that a neurologist suggested being checked for myasthenia gravis. But, that suggestion was not even entertained at the time.

The left side of my face and both my eyelids were sagging. It looked like I had a stroke, but testing for a stroke came back negative.

Diagnosed by accident

Finally, after almost 9 months and 3 different neurologists, I found out I had MG by accident.

By placing ice on my eyelids, I realized it made a difference. I then researched for myself, which led to me taking ice into my medical provider. I demonstrated what happened when ice was placed on my sagging eyelids.

As a result, she was able to document the effect for me. This helped lead to my diagnosis of seronegative myasthenia gravis by my neurologist. I am now on treatment that is working!