Carola’s story

At the age of 54, Carola received the diagnosis: myasthenia gravis

How did you start experiencing symptoms of MG?

My first symptoms were extreme fatigue. I had a demanding job in an education institution and found that I was extraordinarily exhausted every evening. After that, I went to several doctors and described the symptoms, but unfortunately they didn’t take me that seriously. This dragged on for years as I started to have vision problems.

How did you reach a diagnosis?

My diagnosis was ultimately a secondary result. I was bitten by a tick and contracted Lyme disease, got treatment, and eventually ended up in a university clinic that was able to detect antibodies in my blood. At the age of 54, I received the diagnosis: myasthenia gravis. Even if it sounds a bit strange, it was a relief for me. In retrospect, my symptoms made sense.

“The biggest challenge of myasthenia for me is that I can’t really rely on anything anymore. The symptoms of myasthenia change daily, hourly, over weeks, over days.”

How did knowing you had MG change your life?

I have completely reorganized my life. At first I tried to continue working with the appropriate medication, but I just couldn’t. I retired and also gave up my flat. I had stairs inside. I decided that I couldn’t live like that anymore. So I sold everything and bought a small flat that I can manage.

What are your expectations for treatment?

I thought I would be healthy again afterwards. Unfortunately, I had to admit this expectation couldn’t be fulfilled. Now, I’m content if I can lead an independent life, if I can manage my everyday life without outside help, and if the side effects are kept within a range that I can cope with.

What has been the hardest part of this journey?

I had a myasthenic crisis this summer. I woke up because I noticed that I wasn’t able to breathe. A healthy person just can’t imagine what that’s like. I was in intensive care for ten days. I could no longer lift my arms, I could no longer lift my legs. I couldn’t stand on my own anymore. It was as if I was switched off. It’s a state that is very difficult to grasp emotionally. You lie there and you are there, but somehow you are not there. It’s the worst feeling I’ve ever had in my life.

How have you overcome the challenges of living with MG?

In retrospect, it was only through contact with a self-help group that I managed to find my way back to a happy, positive life. I met people who also have to deal with this illness who have given me tips and tricks.