This is the introduction to my personal FND journey
In the beginning of 2023, things changed. I’m not sure what the proper medical terminology is for whatever changes my body decided to go through at that time, but my personal description of the changes is that my body decided to go crazy. I began to have ‘bad days’ more often. I thought I was just overdoing it, so I cut back on some of my activities. But the symptoms still increased (gradually, at first). Although the detailed version would probably make a good story (full of the drama and plot twists and turns that make up all the great stories), I will only give a brief rundown of the events. Perhaps then you will understand why, after pondering the many “maybes” and following many different paths of “could be’s” (offered by both doctors and my own research), of why I was experiencing these physical symptoms, and why I ultimately came to the very professional and detailed conclusion of the reason/cause, which I mentioned before: my body had had enough, and decided to go crazy. These sum it up pretty well:
In the next year, I had more than 10 visits to the ER, saw multiple doctors and specialists. I had blood work galore done, I had multiple CT scans done, I had MRIs of both the head and neck, I wore a heart monitor for 2 weeks, I had an ambulatory 72-hour EEG, I had an EMG, I had a tilt table test, I had an echocardiogram… and probably more that I have forgotten in this moment. While I was borderline on many of the tests, I was told that everything came back “within normal range”, that the things that were found ‘were of no concern’, and that nothing in the results would explain the symptoms I had been experiencing. I had been given a variety of opinions and possible diagnoses by the various doctors - paraneoplastic syndrome, catatonia, unspecified syncope (the fancy medical term for fainting). Some doctors even thought that I was faking my symptoms or told me basically it was all in my head. Finally, I was given the diagnosis of non-epileptic seizures/PNES, a part of functional neurological disorder (FND). More to follow on this topic shortly.
In the midst of being tossed like a hot potato from doctor to doctor, trying to figure out what was going on and what to do with me, my symptoms got worse and I continued to decline. Let’s fly through my year of symptoms: My body randomly started creating alcohol from sugar and carbs (called auto brewery syndrome). In May, I began to have ‘seizure-like movements’ while I was unconscious during the fainting spells (or what I call ‘episodes’). In July, I noticed one day that my left foot was dragging some, and the following day, I came to from an episode unable to feel the left side of my body. In August, I started having issues breathing at times while unconscious (enough to need CPR performed). In September, my eyes started to occasionally roll in the back of my head during episodes. In November, after a fall, I was unable to speak. Now, back to the topic of the diagnosis.
When I was given the diagnosis, the neurologist explained that it is the body's expression of dealing with unresolved traumas and stresses. I was given some websites for information about the disorder and I was referred to a psychologist for cognitive behavioral therapy (CBT) which he said is the most effective treatment for FND. I was having seizures every 1 1/2 - 2 hours (sometimes less), couldn’t usually feel them coming and was therefore falling a lot, I was having issues breathing during them at times, I couldn't feel my left leg or arm, on top of everything else... and you give me some websites and tell me to go to therapy?!? Excuse me?!? Where are the cameras? Is this a joke?
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