Caroline’s Story


I was diagnosed in March 2020 at the age of 48, to my surprise, I had been suffering for a few years. My attacks mimic a stroke. My right side is affected. My face will droop, tongue will flop to the right, speech is slurry or I can’t talk. My right arm becomes weak, my right leg is affected the worst. It will become weak or drag, it can feel heavy, sometimes I have to use a walking aid to help get around. They seem to be triggered by sudden or long periods of pain. I can have 2 – 5 attacks in a year varying from mild to severe & lasting 3 days to 3 weeks. In Dec 2020 I had a severe one. The whole of my right side went. I thought this time I’m having a stroke. Thankfully it wasn’t. It has left, 3 months on, my right leg to hurt from hip to knee constantly. I struggle going up & down the stairs. It has restricted me in doing some simple tasks. I struggle getting words out, I know them but they won’t come. Sentences become jumbled. I have to set myself reminders as I will forget. I am now just starting to learn about my condition, what my triggers are & how to live with it.

I have good & bad days. I am on amitriptyline for pain management & to help me sleep. It may not be visible but I struggle every day. 

This is my normal.

By Caroline, Romford