How I Got My RLS Diagnosis

When I was younger my mother used to complain about a shovel foot, as she called it. Later, I understood that it was restless legs syndrome (RLS).

My mother, however, never went to the doctor with her complaints. I think it was because she thought that there was nothing a doctor could do about it.

Symptoms in my teenage years

In my teens, I sometimes had a weird feeling in my legs, mostly in the left leg. Whenever I moved my legs the feeling would go away. At the age of 19, I went abroad for my studies. A great experience, but this was also the moment that my arms and legs started to act weird. I call it "weird" because I didn't have a name for it then.

My arms and legs sometimes started trembling and making uncontrollable movements. I could not stop this myself. But when it stopped I was exhausted, as if I had done a heavy workout.

Dismissed by my doctor

After this trip, I went to the doctor with these complaints. He thought it was stress and that I needed to relax more. If the doctor says that, you assume he is right because he is the doctor. Part of my complaints went away. I didn't suffer from it on a daily basis anymore, only sometimes. But I still had that strange feeling in my legs sometimes.

Meanwhile, I had a strong suspicion that this strange feeling in my legs was RLS, just like my mother. But because my mother didn't take it to the doctor (because he couldn't do anything), I didn't go either. In the years that followed, my RLS got worse and worse. If I suffered from RLS, my arms and legs usually followed with uncontrollable movements, so I thought that was part of it.

Finding healthcare providers who took me seriously

When I was 29, it was so bad that I despondently went to the doctor again. With the suspicion that she couldn't do anything after all. In the meantime, I had moved and had a new family doctor. She didn't think it was stress. She didn't know what it was, but she took my complaints seriously and I was happy with that.

She sent me to a neurologist in the hospital. The neurologist asked a lot of questions about the complaints: when did I suffer from them, how many times, would it stop when I started moving, etc... He also did some physical tests and I had to have my blood tested. This was to rule out other things.

Finally, a diagnosis!

He also asked me to make a movie when my arms and legs would start moving again. He suspected it was RLS in combination with periodic limb movement disorder (PLMD). I was very happy that he also took my complaints seriously.

Two weeks after my first visit I had to come back to the neurologist. There was nothing abnormal found in the blood. I showed him the video and after a few seconds, he said his suspicions were correct. I was diagnosed with restless legs syndrome and PLMD.

Finally, I had an official diagnosis, after walking around with symptoms for more than 10 years. Finally an answer, but also a lot of questions. Luckily, my neurologist had a lot of answers and I can still go to my family doctor with questions. I'm glad these two took my complaints seriously. If my previous doctor had asked me further, I might have been diagnosed sooner. We will never know for sure.

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