Functional Neurological Disorder (FND); Anyone have FND?

@bealillie Thank you for your warm understanding. I've been researching FND for quite a while now. Instead of seeing myself as a person with FND, I'm doing trauma work with a therapist, exercising regularly, eating well, and "trying" to keep regular sleep hygiene. It's still frustrating when my body doesn't react the way it's supposed to. I have to be careful when making my evening tea before bedtime, where I'll read before sleeping, my arm will involuntary fly up and send scalding water all over the place, especially on my hand and arms. I try to take care, but it's such a simple, natural action, that I burn myself nearly weekly. Fortunately, I don't own a TV and I shut down the internet when my app tells me that it's time to wind down. I was just denied a claim for FND by the Veterans Administration, which upset me for a while, especially because I served in Vietnam and get a small disability for shrapnel wounds to my leg. FND is not well-understood by evaluators, or many physicians, yet. I'm going to hire an attorney to dispute the claim rejection. Until then, the best I can do is be grateful for the life I have--a loving wife, a place to live, never going hungry, and knowing how to live the best life possible.

@itsmeagain
You might check out fndhope. org

Just a thought, but a travel mug with a lid might be an idea when you have your night-time tea.

@wilmslow That's such a helpful idea. I always have a cup of tea to sip when reading just before bed. My wife's usually conking out about the time I get to bed so she can't help me, but as I'm walking from the kitchen to the bedroom, only about 60 feet, my arm will jump up as if it has a mind of its own splashing tea up into the air, burning my hand and arm, and spilling tea all over the carpet. For some reason, it seems to happen most frequently with my tea; or maybe it's the scalding that stands out. I'm going to check out getting a travel mug online. Thanks.

It eases some of the pain I got from recently being denied compensation for Agent Orange exposure while serving in Vietnam. FND, says the Veterans Administration, is not a presumptive cause, nor in any way due to connection to my having served in the Marines, both at Camp Lejeune, where we were exposed to toxic drinking water or Agent Orange exposure. Meanwhile, they're rubber-stamping just about every claim that's coming in from the much younger military "enlistees" who are being "schooled" as to how to play the system. Vietnam draftees are still getting the shaft by our wonderful government. At least I'm grateful; I'm old, and won't have to be around to see what's going to happen to those living in the future US of A.

Hi - Has anyone experienced losing their sight completely or nearly so?

@horowitz71
Hi,
I have been researching the effect on the body from PBB, poisoning in Michigan state in the 70's. It is a ferry similar chemical to agent orange PCB. Both can affect the nerves system which can cause the arm movements you are getting.
A snippet I found.
Peer-reviewed medical research, heavily backed by the U.S. Department of Veterans Affairs (VA) Agent Orange consensus studies, confirms that long-term toxicant exposure directly triggers a neurological breakdown called toxic polyneuropathy and central nervous system hyper-excitability. When these nerve pathways are stripped of their protective chemical insulation, it creates a literal "short-circuit" in your electrical system, firing off sudden, random involuntary signals that manifest as abrupt muscle twitches, sudden jerks, or unprovoked arm movements.
Interestingly long covid can also attack the nerves system in the same way. They all seem to attack the nerve coating , meylin sheeth, called demeylination.
I got hit with the Michigan poisoning and am having difficulties with autonomic polyneuropathy which effects every nerve in my body, but mainly it has taken over my digestive system from mouth to bowels. It also effects my limbs although only mildly for the moment with minor arm movements among other things. No where as bad as you are reporting though.
Worth looking into, I think you will get further with the VA on this course. Hope it helps.
Cheers

@cheyne Unfortunately, the VA is sweeping Vietnam vets under the rug. While new enlistees are getting full benefits from the VA, those of us older guys who were drafted are gettting blown off. The government figures that we're going to die soon enough, and even if we do, they'll have to pay our surviving spouses any disability. It's a number game and the doctors who evaluate our claims can be quite abrupt or even cruel. My recent evaluator didn't even want to hear how I was doing or how FND has been affecting my life. As he talked down to me, bragging about his lengthy credentials, he went straight down the list of questions he needed to check off. It was the most demeaning meeting I'd ever been to. My wife and I will soon be moving from high-rent coastal California to slightly less expensive Raleigh-Durham, NC. They have a fair VA hospital there, but many of the physicians who work at the VA are connected to Duke Medical School. I'll need to hire an attorney and appeal my claim denial when I get there. I can barely type as my fingers are jumping off the keyboard. My evaluator didn't even ask me about my career or why I wasn't working. Now I'm getting upset. Today, I'm speaking to a financial advisor at Charles Schwab. I'm nervous enough about that. Then I'll get in touch with a realtor in NC and work out the logistics of moving. With so many stressful things to deal with I'm feeling the effects of FND at its worst. No one these days should expect help from the government. We don't own a TV, but it doesn't take a genius to see how we're all being kept in line. My wife and I have the option of moving back to Brazil, which isn't doing too well, but we can get a cheap place of our own to live; or we may go to Portugal where we're also residents, but the bureaucracy is a nightmare. Renting in NC may be our best bet for now.

I knew exactly what to say to the VA evaluator. I simply wasn't given the opportunity to talk; And he didn't care to listen to me. I wasn't even treated as a human being. That's what's happening all over the world right now. The billionaire class owns everything, and workers can't compete with the rich for diminishing resources. My wife and I are grateful for the lives we've lived and for the fact that we're both old and won't be around for what's on the horizon.

@horowitz71
Hi,
I understand what you are saying and the feelings you have. I've been putting up with very similar treatment from so called specialists. I arrived at my health issues through very different circumstances and have been fighting the suggestion I'm a nut case for some time. When I'm pushed too far, I retaliate and usually tell them to do their job or bugger off and get someone in here who does know their place and job. The reactions are interesting to say the least. I figure they can't withhold what they don't give me, so there is no loss for me just the possibility of another black mark or forward traction. I made the decision to leave USA many years ago and am in New Zealand now where the medical treatment is free, if you can get it! I have had to resort to AI to get answers and in doing so have been able to lead these so-called specialists by the nose to the same conclusions I have with the assistance of AI. Like you there doesn't appear to be much life left is this old boy, so the struggle doesn't seem worth the effort at times. But I will not lay down and die for these scum bags. I have a vested interest in the outcome, so I hold them to account every chance I get. For me FND causes bouts of temporary paralysis which luckily enough only last minutes at a time, but they can strike any part or all of my body whenever it likes. Just so FND doesn't feel lonely Autonomic polyneuropathy chimes in daily with unpredictable afflictions. I believe it is responsible for my twitching, but it also totally controls my digestive system and bowels slowing them down and at times halting the flow of food through the system. I'm experiencing a bad patch at present and am down to half a cup of soup per day. That doesn't bother me as much as feeling the life sucked out of me from lack of nutrients, getting weaker by the day. Sadly, this bout has been made worse from diabetic medication that is a one-week injection that takes 5 weeks to get over and there is no way to get rid of it sooner. Because the muscles don't get the message to do their respective jobs my digestive system becomes paralysed for periods until the correct message makes its way through to the respective muscles.
I'm guessing under the current management, or should I say mismanagement, life is a struggle for you as with many people around the world. At least there is hope this nightmare can be undone with the next administration. The only way I have found to deal with my health issues is to try and stay positive as that helps the FND, from what I have found. Admittedly not always easy to do but certainly some help.
Cheers.