Has anyone had to deal with a functional neurological disorder?

@papa58
Welcome to Mayo Connect!
It must be very upsetting to watch your granddaughter suffer.
I personally don’t know anyone with a functional neurological disorder but I have heard from someone with a close relative diagnosed with it.
However it presents the person cannot control what’s happening. It can be the body’s protective response to something very stressful that happened or is happening.
All testing is normal.
Therapy is usually the treatment.
I hope your granddaughter gets back to normal soon.

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 - welcome to Mayo Clinic Connect.

I wanted you to know I moved your post here so that you could chat with others who've talked about functional neurological disorder (FND), such as @papa58 and @astaingegerdm:

- Has anyone had to deal with a functional neurological disorder? https://connect.mayoclinic.org/discussion/has-anyone-had-to-deal-with-a-functional-neurological-disorder/

I'm also tagging @amber3212 @redhead63 @purpleturtle @bhill92 @tywebb @katcollins, who have also mentioned FND or versions of it and may have comments on your spells, shortness of breath, total body weakness, chills, tightness in the face and throat, pain in the back and shoulder blades, and headaches.

They also may have thoughts about other diagnoses they may have been given with similar symptoms or FND treatment programs they'd suggest. I'd also like you to meet @jenniferhunter.

whs2026 - when you mention spells, are you talking about a combination of all the symptoms you listed, or are you talking about something different that occurs? Will you explain this a bit more?

@lisalucier Thank you for responding & your inquiry.
The symptoms I listed all occur at the same time, in the order that I listed them, as to what symptom starts first to the last.
My “spells” come right after another now…just a few minutes apart all day & evening and now experience a spell during the sleeping hour.

@whs2026
Do you have any anxiety or depression issues?
Have you considered a counselor or cognitive behavioral therapy?
Best of luck to you,
Jake

@jakedduck1
Thank you for your questions.
No anxiety or depression issues....dealing with a lot of frustration and not able to do anything because of the NES!
Mayo - JAX Neurologist PA referred to me a Mayo Psychriatrist, who referred me to a Mayo Neuroscience Physchologist re: RELIEF Program for NES - Functional, not Structural, Neurological Disorder; had nine one hour sessions, wasn't getting anywhere, so Physchologist said that we needed to take a pause. Think the Program was to include Cognitive Behavioral Therapy.
I also have Parkinson's since 2016; May 2019 had a life thretening Pulmonary Embolism in lung; July 2021 involved in terrible auto accident (concussion & mild traumatic brain injury) ; 2023 had four heart procedures ( Pacemaker, two Angioplasties - stent and A-Fib Ablation = a lot of trauma.
Currently, no treatment program has been found for me at this time.

@whs2026 Lisa, additional information about me:
No anxiety or depression issues....dealing with a lot of frustration and not able to do anything because of the NES!
Mayo - JAX Neurologist PA referred to me a Mayo Psychriatrist, who referred me to a Mayo Neuroscience Physchologist re: RELIEF Program for NES - Functional, not Structural, Neurological Disorder; had nine one hour sessions, wasn't getting anywhere, so Physchologist said that we needed to take a pause. Think the Program was to include Cognitive Behavioral Therapy.
I also have Parkinson's since 2016; May 2019 had a life thretening Pulmonary Embolism in lung; July 2021 involved in terrible auto accident (concussion & mild traumatic brain injury) ; 2023 had four heart procedures ( Pacemaker, two Angioplasties - stent and A-Fib Ablation = a lot of trauma.
Currently, no treatment program has been found for me at this time.

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

@lisalucier Lisa, how can I connect with the people you tagged in your reply? How do I connect with @jenniferhunter?
Thank you, Bill

@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?