Functional Neurological Disorder (FND); Anyone have FND?

I'm sorry to hear about your situation, especially your living in a nursing home. I'm fortunate that my wife works from home and is nearby when I need assistance. I get around with a walker and sometimes only a cane. My symptoms can vary wildly from day to day or even moment to moment. Before being diagnosed, and going from doctor to doctor, often being told I was a nutcase, I dealt with tremors, nervous tics--very common for my arm to shoot out while carrying my nightly cup of tea to the chair where I read before bed. The dizziness is constant--sometimes so bad I'd fall when trying to stand up or while walking. I had a physical therapist who worked with me to teach me how to walk again. P.T. has helped me a lot. I often have trouble swallowing and by the end of the day I am barely able to speak. Again, a speech pathologist helped me by giving me exercises which strengthened my vocal chords. I learned Chinese martial arts when I was young, and now I'm able to do a 15 minute to half-hour set of a full form which I must do every day. My diagnosing physician, Chief Neurologist at Stanford Univ Medical told me that any stress will worsen my condition. Most of my stress comes from within, so I'm diligently working on healing trauma from my early years growing up in an unsafe household where I was forced to leave when I was only thirteen in order to survive--stepfather beat me senseless for the last time for no reason. I was a good kid. These days I do the hard work of finally growing up--never went to school, so I didn't have peers to go through junior high/high school with--just hung out with older surfers and became part of the surfing sub-culture. I believe in god, but not religion, and am resolved to stay in the moment and be kind to others whenever possible, which is always. I don't miss having been an athlete for my whole life. I'm content to live simply and gratefully. I've done much volunteering over the years, from tutoring non-English speakers in English, to volunteering in nursing homes where I was able to connect with people who were being grossly mistreated to those who simply had nowhere else to go. I started a garden in an atrium at one home. It had been a large mass of weeds, but over time, with the help of the residents, we turned it into a beautiful flower and vegetable garden. One time, I went to fill a water pitcher in a room whre a man sat alone in a bed with his television blasting while professional wrestling played on the tube. Other attendants told me that he was severely mentally ill and couldn't even communicate. I noticed that on his bulletin board, he had a single picture, actually a postcard from Lisbon. I turned to him and asked him, "fala Portuguese?" and his eyes lit up. He didn't speak or understand a word of English. We chatted in Portuguese and I'd visit and talk with him during the time I was volunteering there, and later on, after moving away, I'd send him postcards from my surfing travel adventures. And when my wife and I went to Europe, I sent him postcards and a t-shirt we picked up while in Portugal. Thinking about the joy I brought to one lonely, isolated person was a wonderful feeling. Now, when I see old folks sitting alone on park benches or wherever/whenever I cross paths, I never pass them by and stare, as if I didn't care, I say, "Hello in there, hello." If you have FND, it's being widely researched these days, and has become more widely diagnosed. I'm currently taking no medication, I socialize as much as possible, eat right, and most importantly practice good sleep hygiene. A good night's sleep is so important. There's a lot of info on the net (some good, some sketchy), but hopefully you will connect with a group of people you trust to help support you on your path. May you remain positive, and keep growing and learning. Life is simple; not easy, but simple. It's a game that has to be played, and played seriously with a smile on your face. Take care and feel free to reach out to me. Most important: Train your body and your mind will follow (even though FND crosses the wires from your mind to your body). Breathe, Flow, Live.

Oh my goodness. almost 30 years of drugs, tens of thousands of dollars, alcohol addiction (don’t go there- it doesn’t pay off in the long run, I promise), devastating effects on family, and being blown off by a highly acclaimed neurologist in Ft Worth, TX, and my symptoms are almost identical. I was just told about this by a neurologist in my “back yard”. More tests to follow, starting tomorrow. Any gastrointestinal symptoms? Mine are significant.

A healthy gut is key to good health. With FND, mine is a mess. Three weeks ago, while awaiting a flight back to the U.S. from São Paulo, I felt ill. I decided to take the flight anyway, one that required 3 connections with no time between stops. I had non-stop diarrhea for the next 16 hour trip, then spent 4 days hospitalized after returning to CA. I was diagnosed with diverticulitis, colitis, and told that I also had an upper stomach hiatal hernia along with kidney failure due to dehydration. I'm still not back to normal, but I've had a good, healthy diet for the past 40 years: lacto-ovo vegetarian, sugar and caffeine-free, shunning almost all processed foods as well. I always thought my lungs were my weakest part of my body, having had pleurisy as a child, and several bouts of pneumonia, the worst during Marine Corps boot camp. Doctors will not order further tests--scans, colonoscopy, or other exams. My wife and I had excellent healthcare while living as ex-pats in a country that offered universal healthcare to residents, but back here in the U.S. we're stuck with expensive, abysmal "healthcare."

Having FND, it's important to cut out stress from my life. I meditate, do Taichi, exercise daily, eat well, and have good social support. Yet, I live on the verge of flipping over to the debilitating effects of FND. I'm still feeling withdrawal symptoms from abruptly stopping Klonopin after taking 2 mg/daily for many decades. It's been over year since I last used Benzos, but I still crave using them. I haven't been able to locate a doctor who will prescribe them, not even very small doses; Even 0.5 mg to take occasionally would help, most definitely when I'm having an anxiety or panic attack, so I'm becoming more and more agoraphobic and housebound. This is not living. We're older, and should my wife die before me, I plan to suicide. I absolutely refuse to end up in a nursing home. I volunteered quite a bit when I was younger and mobile, and after volunteering at was supposedly an excellent nursing home, Sunrise, I saw inhumane treatment such as poor hygienic conditions, lack of medical care, failure to respond to residents' needs, and worst of all, just plain neglect.

Yes, clonazepam / clonopin has been very helpful with many of my symptoms (with a nice nap afterward), and my dose is small enough that i dont notice any dependency. I only take it when i really need it. Guess I should anticipate my provider to stop prescribing it after a period of time.

Your symptoms are much more severe than mine, but I know what it’s like to spend the better part of the day in the restroom. The only upside to that is being able to prove it’s not “all in your head”. I hate when someone tells me that. I sure hope things improve for you. I understand fighting the hopelessness is a never-ending battle.