I am 43. If I wrote a book and managed to cover every trauma I have experienced, without missing anything it would be several volumes long and even I wouldn't believe all that crap happened to 1 person. I know me personally and I hardly believe it. I remember things in my life that were very likely FND attacks. I'm supposed to talk to a therapist about when all of this started... Ok, so how can I figure that out exactly? How bad of an event was bad enough to consider that the start?
I have tried to explain to a few doctors now that I really feel like I have had FND for my entire life, and that now something new is happening or this condition is progressing or being irritated by something else. While most agree the idea follows the evidence, they still clearly doubt me in the way they treat me or fail to treat me. I've been me my entire life, and what I think they fail to understand is, I'd know if this was normal for me or not... Just because I wasn't aware I had FND before doesn't mean I didn't still have it. It means I coped with it, unchecked, my entire life... which explains all of my jacked up coping skills!
Here's the thing... If someone is doing something, and it isn't the way that you do it, is it wrong? What you do may be faster, or more efficient, but is doing it another way actually, wrong? I have learned how to manage this condition, through the 70s and 80s, grew up, became a functional well-paid professional, and raised an amazing daughter... all with FND. I never knew I had this, but I still had it. After they told me about this condition, I really spent a lot of time dealing with the idea of this. I was given zero help. I waited for months to see a guy billed as one of the best minds in the country in the field of movement disorders at the University of Texas. I was in a fully degraded state, unable to work or function, helped in by my husband. He spent 1 hour with me. He gave me a quick assessment and then handed me a link to a website. Neurosymptoms.org/ He told me that most people that see him have FND, and that if I wanted to get better, I had to really believe in my heart that he was right and I have FND. Then, just knowing that I have it and it's in my head, combined with reading that website, is enough that most people don't need any other help. It was abrupt. He said nothing to me about my condition and I clearly could not care for myself. My attacks come and go but on bad days I'm absolutely disabled. I begged him to help me with my FMLA paperwork or to help me with some sort of treatment to help me recover. I have dystonic attacks, and the pain is off the charts. He looked me right in the face and told me to try yoga, and that I should consider counseling. I couldn't shower by myself that week, and he recommended yoga. He also told me he couldn't fill out the FMLA paperwork because there was nothing wrong with me.
I was very hurt by that appointment, but I tried very hard to listen to the doctor and do what he told me to do. It was Christmas time, and I almost lost my job, but I managed to pull through at the last moment thanks to my boss giving me a little wiggle room. I was permitted to work from home which allowed me to keep working most days. I still have to bow out on my bad ones. I took up hypnotherapy with age regression and acupuncture. I unlocked a LOT of pain, and it goes way back. Back to infancy, when I violently abused by my mother. She hated me. I reminded her of my father... or at least that's what she told the police when they asked her why. I was taken away at 2. I weighed 18 pounds, and could not talk or walk yet. She told people I had a bone disorder, but in reality, she didn't feed me... or talk to me, or really handle me in any way except to make me quiet. I was left isolated all the time and beaten whenever I made any noise. My own grandmother called to have me removed because she was afraid of my mother, and knew I would die if she didn't call them. I had 2 black eyes so bad they actually went up over the back of my head and down the back of my neck. My foster family said I was a very good baby, but I never cried. Did my FND start then?
I had migraines so bad as a small child, at 4 and 5 years old, my mom used to give me large doses of adult Tylenol and I would sleep 18 or more hours. I always held the same spot on my head. It is the spot that now pains me the most when my big attacks happen... Did it start then?
My adopted father died after an 18 month battle with cancer, crushing the family and leaving my mother with 4 girls to raise in her 30s... Did it start then?
I fell 8 feet onto a concrete sidewalk, landing directly on my skull, requiring an ambulance and leaving a goose egg on my head the size of a football... Did it start then?
I had a cluster of aura seizures 12 years ago. I was told it was stress and I should see a therapist. I was going through a nasty custody fight and a separation at the time. He used those events against me in court. I had to sware under oath that I didn't have seizures - since they are pseudoseizures, it wasn't completely a lie... Did it start then?
5 years ago I suffered my 1st dystonic attack in both of my legs and feet... Did it start then?
4 years ago, my right leg shut off at work like a light switch, and didn't come back for a few weeks... Did it start then?
14 months ago, I lost control of my spine for 36 hours straight, in a fully recorded incident at 3 PM in the afternoon. Since that time, I have never fully regained sensation on my right side... Did it start then?
Even if all I learn from this are new coping skills that at least is more than I have now, But how far back do we go? How badly do I have to feel before I am raw enough? When am I worth helping? I'm simply asking for a plan of action to follow instead of spinning me like a kid with a pinata and hoping my stick connects. They don't want to treat me because they can't help me. They already told me that. What it really means is in 12 months, good or bad, I won't have a doctor waiting for me at the end.
Nobody has ever asked me to see any of the videos of what happens to me. Nobody has asked me about the pain or offered me any sort of help or rehabilitation until being told I need to spend at least 12 months in CBT. I see everyone so positive this week and it's touching but I'm angry. Angry that this is not how I'm treated. I will go to CBT, and I will make the most out of it because it is currently the only option I have... But I still think this is bullshit, and they should be ashamed of themselves.
How can this be FND when I have a positive Babinski reflex?
RE: What or who inspires you when you have FND?
I have been told by a Neurologist I have NES, I believe I have FND, Help!
FND diagnosis and if you've been given help.
