After seeing a neurologist for about nine months, we came upon the solution for me to see a different neurologist, in the same office, since my doctor felt she couldn’t help me. Her specialty was migraines and seizures and she was not familiar with the dysfunction of the autonomic nervous system. I felt it might be easier to stay in the same office since maybe the two doctors could communicate or have access to more information than leaving the practice altogether.
It has now been a little over a year with my newer neurologist. In this year, I have seen him every month at times. One appointment was to order an MRI without contrast to rule out certain diagnoses. Then, the next appointment was to follow up on that test and to order something else. It felt like it dragged on and on, leaving me to wonder why everything wasn’t just all tested at once. I could sense the uncertainty, and while he admitted that he isn’t familiar with dysautonomia, he sympathizes and ensures that he will help somehow.
The first neurologist ordered an EEG and she said everything was delayed but showed no signs of seizures. This was two years ago, before my pacemaker. After leaving that test, my heart rate dropped and I passed out in the hallway. Fortunately, I had a heart monitor on at the time and called my electrophysiologist and explained what happened. They looked at the episode and determined my heart rate plummeted.
Now, two years later, my new doctor decides to do another EEG. I find myself nervous, wondering if the testing triggered my episode last time. But I also find myself frustrated and here’s why: two appointments ago, my neurologist said that my (dysautonomia) episodes sound like seizures. He offered me seizure meds and I quickly declined. I avoid medication unless absolutely necessary or given a proven diagnosis. I stated that I would never take meds for a guessed diagnosis and that I was sure these episodes were a result of autonomic dysfunction, or dysautonomia, which had also been diagnosed by my electrophysiologist. Dysautonomia is common with Ehlers-Danlos patients. He admits again he is not knowledgeable in EDS or dysautonomia. “Let’s just try another EEG.”
Keep in mind that there are 12 million misdiagnosis per year. Having a complex illness makes it tough to get proper treatment and management due to the lack of knowledge in rare diagnoses. As a patient, it can be hard to walk away because we feel almost desperate to get care but also hopeful that we will make progress over time; maybe the doctor will come around, research, or learn more. Starting over is time consuming and you already put in so much…just like a relationship. Sometimes hope keeps us there longer than we should stay.
Finding a specialist (there are only three clinics in the country) that specializes in Autonomic Dysfunction for me is a must. Looking back, the last two years was a waste of time. The last two years, my diagnosis was never understood by my doctor, nor will it ever be. I was nearly fitted into his specialty of seizures, only to be added to the 12 million misdiagnosed, because that was his specialty. That was what he was comfortable with. Any many patients would have trusted his judgment, taken the pills and felt they were being cared for. Not me.
As I leave from my EEG test, I know that it may be the last time I come to that office. I chose to humor my doctor and myself with the test because it never hurts to rule out a diagnosis (again). I know that months from now, I will travel outside of the state to see a doctor that truly understands what is going on with my nervous system. After spending my entire life having notes in my medical records of “unusual symptoms” that no one could piece together, for the first time ever I will have a doctor that has that missing piece of the puzzle.