Please note, this is my personal experience of living with Ehlers Danlos Syndrome, the treatments and path to diagnosis and should therefore not be taken as medical advice. I am aware that some complaints are only indirect EDS symptoms but these also contribute to the overall picture and my experience with the condition, EDS.
In 2018 and 2019, my condition deteriorated faster than in previous years. My strength declined, and I became unsteady on my feet. I had foot drop, it took me longer and longer to focus my eyes, so I often saw cross-eyed, and it became increasingly difficult to maintain physical strength. Looking back and understanding EDS symptoms, my body could no longer handle the tension I was holding in my subconscious. My body was tired from decades of tension. Mentally, it was a surrender to no longer live with tension in my body. During rest periods, I had less and less control over my body and muscles, and in these moments, my hands, head, and sometimes even my face began to shake. After rest, I found it increasingly difficult to tense my body again, which made my gait unsteady.
After an appointment with my GP, I was referred to a neurologist. Based on my symptoms, he quickly diagnosed Parkinson’s disease. Of course, in a moment like that, the ground falls out beneath you. While I felt like I was in a downward spiral, this diagnosis made the lowest point of that spiral even more frightening. I had some doubts, too, but all the symptoms were so strongly associated with Parkinson’s that doubting this terrible diagnosis felt like wishful thinking.
I was prescribed Parkinson’s medication, initially levodopa and later madopar, the dosage of which quickly increased to the maximum. I could feel the medication doing something to my body, but it wasn’t having the desired effect. After about a year, the neurologist had doubts, and I had a DaT scan. This scan provided the definitive answer: It wasn’t Parkinson’s disease. Of course, this was a huge relief, but I had lived with great uncertainty and fear for the future for a year, and friends and family had sympathized with me.
Apparently, a Parkinson’s scan isn’t standard practice. Symptoms are enough for a neurologist to diagnose Parkinson’s. I never understood this, and at one of my first appointments with the neurologist, I asked why it wasn’t done immediately. He said it was only done in cases of doubt. My diagnosis was a mistake, and I’m glad I don’t have this terrible disease. But a diagnostic scan could have saved me a lot of suffering. My medical history could have raised doubts and justified a scan. I was, and still am, happy and angry about the way things turned out.
Living with Ehlers Danlos Syndrome 