Has anyone had to deal with a functional neurological disorder?

For 3+ years, I have been dealing with the following daily, numerous debilitating symptoms, which were diagnosed in 2/2025 as Non-Epileptic Spells (NES) - Functional Neurological Disorder (FND):
1. Shortness-of-Breath, followed by
2. Total body weakness, followed by
3. Tightness in throat & face - difficult to speak, followed by
4. Chills
5. Pain in back between shoulder blades
- Headaches
My spells occur out of nowhere all day and evening long, even during sleeping hours.
Does anyone know of a treatment program for NES?
Or has anyone had these symptoms and it was diagnosed as something else?
I would greatly appreciate any help, information, guidance, etc.

For 3+ years, I have been dealing with the following daily, numerous debilitating symptoms, which were diagnosed in 2/2025 as Non-Epileptic Spells (NES) - Functional Neurological Disorder (FND):
1. Shortness-of-Breath, followed by
2. Total body weakness, followed by
3. Tightness in throat & face - difficult to speak, followed by
4. Chills
5. Pain in back between shoulder blades
- Headaches
My spells occur out of nowhere all day and evening long, even during sleeping hours.
Does anyone know of a treatment program for NES?
Or has anyone had these symptoms and it was diagnosed as something else?
I would greatly appreciate any help, information, guidance, etc.

@whs2026
Hi,
Im sorry to see your dealing w/ so many negative symptoms...have you had any double or worsening vision, trouble swallowing & extreme weakness of the extremities, trouble swallowing, difficulty lifting your head, shortness of breath upon exertion, these are symptoms of myasthenia gravis, which I just found out I had in Jan this yr, mine started w/ the vision issues & when I was diagnosed by a blood test my neurologist ordered.
Not to say that you have MG which is rare, thankfully!
I hope n 🙏 you get some answers soon!
Michelle

On October 7th, 2025, my life changed when a box fell on the back of my head. I sent my system haywire because 30 years ago, I was in a car accident that put me in a two-week coma. I have seen many specialists and feel lost. I have been diagnosed with FND along with many other diagnoses. I have all of your symptoms plus more. You are not alone. It is actually nice to hear from someone experiencing similar symptoms. This is my first time saying something on Mayo Connect. I am a little nervous. I'm not sure if anyone understands because I have felt so alone and that no one believes me. Also, my brain understands everything going on around me, but it is like it's offline, where I lose the ability to connect and do other things, like speak or move/control my arms and legs.

On October 7th, 2025, my life changed when a box fell on the back of my head. I sent my system haywire because 30 years ago, I was in a car accident that put me in a two-week coma. I have seen many specialists and feel lost. I have been diagnosed with FND along with many other diagnoses. I have all of your symptoms plus more. You are not alone. It is actually nice to hear from someone experiencing similar symptoms. This is my first time saying something on Mayo Connect. I am a little nervous. I'm not sure if anyone understands because I have felt so alone and that no one believes me. Also, my brain understands everything going on around me, but it is like it's offline, where I lose the ability to connect and do other things, like speak or move/control my arms and legs.

Hi - I have recently been diagnosed w. FND Feeling quite isolated and as if some of my family think this is "all in my head" well, you betcha! To be more specific: all in my brain. Pretty wide-spread symptoms: most but not all (thankfully no seizures or incontinence) but full body, senses, cognitive and autonomic nervous system. Daughter said "just need an OT, mom". Finding my emotions as difficult to control as my arms and legs! Did lots of work with Psychiatrist 40 try ago and felt essential free of anxiety, depression and release of trauma from childhood abuse. But, boy do I feel I need it now! At first I thought I was imagining the tremors then all the other symptoms started and now I feel pretty isolated and alone - anyone relate? I need to talk with someone who is going through this. Thank you

@jaberg Thank you for your reply, and I sympathize with what you are also going through.
1. What treatment plan, if any, are you on or that has been offerend to you?
2. Have you spoken with anyone else about our respective similar symptoms, and if so, what have you been told?
I went back to read some previous messages, a fellow (who wrote three years ago on Mayo Connect) said that FND is not a psychologicial issue, it is a brain issue - that FND is due to a problem with the functioning of the nervous system - the result of FND is that the brain had been rewired (from trauma) - FND is simply a result of this rewiring - brain hardward is okay, it is the brain software is not.
3. Have you heard this?
I greatly appreciate your comments on Mayo Connect.

@jaberg Welcome to the team and Mayo clinic connect, Hi my name is randy and i understand FND because i had a few brief encounters with some of the symptoms, Had a tumor in my brain and sis not know what a new chapter in my life this was going to be. First symptom was a ground seizure that happened twice before being treated and hospitalized. Now have to jump forward to the present time . It has been two years this march that they operated on me and have come so far in recovery from two brain surgeries. I have new life noww.

@whs2026 Hello Bill. I was reading over your comments trying to understand your situation. May I ask what Mayo specialists have ruled out? You mentioned Parkinson’s, but also a concussion, so it makes me wonder if you had a neck injury or shoulder injury? I do know that a fainting episode can look like a seizure when the brain doesn’t get enough blood and oxygen supply because of dropping blood pressure. I once passed out during some painful neurological testing, and they sent me for an EEG to test my brain and a sleep study. I didn’t have seizures. I also have a condition called Thoracic Outlet Syndrome or TOS which is a compression of nerves and blood vessels in the shoulder. It causes tightness from the neck to the scapula. If I turn my head, the pulse diminishes in the base of my neck. Some patients can pass out from this lowered pulse that can affect circulation to the brain. Also, if the cervical spinal alignment is off, it can stretch the vertebral arteries that run inside the cervical vertebrae. That is also part of the blood supply for the brain. I was getting dizziness and some vertigo when my vertebrae were twisting due to muscle spasms. I was in need of spine surgery at the time for a bad disk. My experiences with these issues caused some similar symptoms and weakness when an episode of crashing blood pressure happened. For me that was a response to fear and not related to heart function. Fainting is a protective response if blood pressure is spiking and it’s meant to be a safety valve to release high blood pressure. That is something that has to be evaluated of course. Has anyone evaluated your cervical spine or tested you for thoracic outlet syndrome? Have they ruled out cardiovascular issues? What others details can you share?