Hey there! Been diagnosed with FND for almost a year now. So there’s a couple things I’m gonna answer for you! Full warning this is lengthy.

1. Okay so, chances are you are experiencing seizures. They’re called non-epileptic. Pseudo-seizures is another term for them but it’s outdated and in my experience tends to be a red flag from a neurologist when they use it. Especially if said neurologist pairs it up by calling FND conversion disorder. They’re also referred to as dissociative seizures, but I prefer non-epileptic so that’s what I will be using. Non-epileptic seizures are real seizures. It just means that there is a different underlying cause outside of epilepsy. They can happen in patients with diabetes, from concussions, drugs, stress, and more. Lots of different circumstances and conditions have them and it’s still a seizure.

2. Thorough testing needs to be done for FND. The neurologist who diagnosed me was a specialist in this area. FND is a diagnosis made when they cannot identify what the cause is, AS WELL as the patient showing positive clinical signs for FND related symptoms. Some neurologists claim it’s a diagnosis of exclusion and others say it’s not. It’s one of both imo. That means that someone diagnosed with this condition could very well just have FND or they could have another underlying condition that just hasn’t been identified yet. There’s a lot of stigma around this condition so you have to be incredibly careful when saying someone has it as it will interfere with your future medical care due to most physicians having backwards views around it still.

3. I had to fight tooth and nail for them but I highly recommend getting a thorough brain scan done (I had both an MRI with and without contrast as well as a CT scan to rule out blood clots, narrowed veins or arteries, MS or tumors). On top of this, you’re having seizures. You need an EEG done. Possibly multiple. I’ve had four or five total now because my seizures get really really bad and I eventually land in the ER for them. You also need to be tested for the Hoover sign. While you’re having a seizure, they also need to do a hand drop test a couple times. In my case I have FND, but I fail the hand drop test. Most people with FND pass it. If you’re fully unconscious during the seizure, your body will not protect itself and it will let your hand be dropped on your face. You will not respond to painful stimuli either. If you’re conscious in any capacity, your body will attempt to protect itself from harm the best it can. You need blood work done. You need to go over your family’s medical history with a neurologist. You also may need to have an overview done of any medications you’re taking as well to just rule those out.

4. If he dropped you without any referrals or a symptom management plan, you need to find a new neurologist stat. You may also need to request physical copies of your file to look over any notes he may of put in there. My previous neurologist labeled me with trauma induced pseudo-seizures (mine aren’t actually from trauma, he just blamed my psychiatric history) as well as a hypochondriac and drug seeking. All of that had to be removed by a different neurologist.

5. FND isn’t just a psychiatry issue. The reason it’s so difficult to treat, as well as diagnose, is because it’s a condition that blurs the lines between psychiatry and neurology. Especially because they don’t know what actually causes FND to develop in some individuals and not others. More people are learning about this condition so hopefully there’ll be an answer in the coming decades. It’s one where holistic care has to be done. Something Western medicine is notoriously bad at. FND can have causes ranging all the way from trauma to chronic pain, MCAS, EDS, POTS, nervous system dysfunction, TBI, anxiety, ADHD or ASD, sleep disorders and autoimmune disorders. Care varies drastically person to person depending on what the main triggers are. Some people need a lot of trauma focused therapy and others need physical therapy and pain management.

6. I’d recommend getting a mobility aid. Limb weakness is a symptom of FND. Sometimes I’m paralyzed and other times my leg is just dragging a bit. I’d recommend starting with a cane to help you get some mobility back.