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.
Quotes and links are freely available information from the internet and not verified. These, and my experiences, are not intended as an alternative to medical advice.
When the diagnosis of Parkinson's turned out to be incorrect, several scans and tests followed that did not provide any definitive answer as to what the cause could be. The neurologist did not know what to do, but in my opinion left nothing to chance.
An examination by a rheumatologist was also planned for this. In my opinion, he could have diagnosed EDS at that time, or at least asked questions in that direction. Instead, he made it clear to me that he could not do anything with the referral from his neurology colleague. He literally said that he had a blood test done out of good intentions, but that he did not suspect that anything would come of it, and that was the case. This felt like I had ended up in the middle of a dispute between doctors. As a result, I was not heard, let alone taken seriously.
The diagnosis Functional Neurological Disorder felt to me like the diagnosis fibromyalgia years ago. It is a diagnosis of excluding other causes, where ultimately the complaints remain and they are given a name. With FND there are physical symptoms of failure, which are often acute, such as after a trauma. This was not the case with me. The complaints had occurred gradually. Typical for FND is that the connection between body and mind is interrupted. In a body that is tired, due to constantly low muscle tension and unstable joints, in my experience the connection between body and mind is also disrupted, but this has no psychological or neurological cause.
The diagnosis FND opened up the possibility of therapy for me; rehabilitation therapy and hypnotherapy. Both were aimed at restoring the connection between body and mind. Hypnotherapy in particular helped me to understand my complaints.
Living with Ehlers Danlos Syndrome 