How much do you know about Functional Neurological Disorder?
Functional Neurological Disorder is really confusing. I was in the hospital when this diagnosis came up as a possibility. I was off and on the phone with my mom constantly because I needed more information.
My inpatient social worker (who was AMAZING) was actually one of the first people to mention FND as a possibility. I have a friend out of state who is a full-time wheelchair user due to a spinal cord injury and she gave so much helpful information to my mom while I was in the hospital and gave her all of the right questions to ask my neurologist to make sure they were ruling out all other possibilities.
If you look up Functional Neurological Disorder, what do you see? "Functional neurologic disorder is related to how the brain functions, rather than damage to the brain's structure (such as from a stroke, multiple sclerosis, infection or injury). Early diagnosis and treatment, especially education about the condition, can help with recovery."
The easiest way for me to explain it to others is there is a problem with how my brain is sending my body signals. My brain tells my body one thing and it won't react, but occasionally you will see my body twitch or shake and we like to think that is just my nerves trying to wake up.
Functional Neurological Disorder can also be called Conversion Disorder but I refuse to call it that. When I was inpatient in the hospital and finally had a diagnosis, one of the nurses who thought I could "just get up and walk" asked about my diagnosis and how my test results were coming back and when I said "It's possibly Conversion Disorder." She was basically like "Haha, figures.." She wasn't shocked at all and pretty much thought that's what it was. The Conversion Disorder definition is "Conversion disorder is thought to be caused by the body's reaction to a stressful physical or emotional event." The way this nurse and many other nurses/doctors see it is that I'm mentally unstable and I am causing this. They kept saying"Open your hands, keep your hands open." My hands were seized. That was one of my FND symptoms and you can't just open them or it causes excruciating pain. They would also say "Put your feet on the floor, don't let your ankles roll in." I couldn't feel my feet so I had no idea when they were doing anything. That's why the inpatient physchiatrist also said "You can leave when you can walk." I have many stories that I will continue to share during my blog...
So, what caused my Functional Neurological Disorder? There are a lot of things that factor in because I was already inpatient due to trauma and my mom would say "Her ex tried to kill her." So if I don't answer your questions on that, that's enough information for you.
I experienced a trauma that has set me off. I was inpatient, trying to get help, trying to get set up with some outpatient therapies to actually help me.. When you are inpatient you literally feel like a zombie because you are so drugged and living a non realistic life. You are meeting with a physchiatrist every. single. day. who can change your medicine each day so you are on something new ALL the time. Well, I was reacting to ALL of the medicines which makes sense now that my outpatient physchiatrist recommended the GeneSight test and has found out that I have the MTHFR gene which plays a huge role in how my body responds to medicines.
The physchiatrist was extremely condescending the whole time and him and most of the nurses thought I was just being the difficult patient. He told me multiple times " In my blah, blah, blah years of practice I have NEVER had a patient who reacts to medicine the way you do."
So between trauma going into the hospital, trauma in the hospital, medication reactions, and long term PTSD, that whole mix has triggered my Functional Neurological Disorder. If you look up the cause of FND it says something along the lines of the "unknown." There is really no way to say what has caused it but the mix of it all would make sense.
Every day is a new day. My symptoms change constantly but the ones that seem to stick around are my paralysis of 4 months, Non-Epileptic Seizures, & a few others. Here is a list of my varying FND symptoms:
-Paralysis
-Weakness
-Non-Epileptic Seizures
-Headaches/Migraines
-Abnormal Movements/Tremors
-Chronic Fatigue
-Low Motivation
-Brain Fog
-Fibromyalgia
-Bladder Issues
-Vision Issues
-Sleep Disturbances
-Fainting
-Numbness/Tingling
There are more but this is a good long list to give you some insight on my day-to-day. I have joined many support groups and have continued to do research. I want to help educate the world on my condition because it is so confusing and complicated. Feel free to reach out or send me an email if you ever have questions. Help me spread awareness.
With love always, Aspen 🧡💙🧠