Has anyone had to deal with a functional neurological disorder?

These symptoms can be miserable. They’ve increased and decreased over time. I had a few hard years around 30, and about six years of it now at 50. I wish I knew what caused the relief in between. Nausea, tremors, cold sweats, and anxiety are my biggest problems now. I’m supposed to see a movement specialist (in a few months!). I wish I had some advice. Pay attention to your thinking and mood, I’ve experienced some drastic swings in those areas this time around.

Clonazepam can give some relief, but you feel like a felon picking it up at the pharmacy.

@astaingegerdm
I have just been diagnosed with this. This explains a lot of symptoms going on with me. It has taken a year to get a name to my symptoms and episodes, I call them. I'd like to make an appointment but I'm not sure how I'd get there in Mayo. I did have a phone consult today. I guess I will have to see what's next.
Thank you.

@galere
I’m sorry to hear that you are dealing with this. It must be a relief to get a diagnosis though.
Did you have a phone consult with Mayo physician or how to get an appointment?

@astaingegerdm
I have a referral and I talked to neurology on the phone yesterday, I just can't afford the flight going to mayo and expensives to stay for however long.
What kind of treatment do you receive. Was it therapy

Hello all I can only recommend as an ad to anything else you're doing going to dissociation for the treatment of neuroplastic symptoms, symptomatic.me
With the FND is one of the many diagnoses they consider to be neuroplastic and there's lots of practitioners and resources
Also, there's a place in California that does online things too but interesting called re-– active physical therapy. I think they specialize in FND and take it quite seriously and I've had a lot of success in rehabbing people.
So it can't hurt can only add to any number of resources. excuse any typos, I am dictating.

@galere
I didn’t have the condition- I heard about it from a friend who had a relative with the condition. Their treatment was therapy.
I understand the difficulty going to Mayo Clinic. It is expensive with travel and lodging. The stay could be several days.
Do you have a major medical center, such as a university, near you where you can inquire about evaluation and treatment?

@bealillie Do you have information on the place in CA?

@astaingegerdm
There's mosaic hospital and they are connected to Mayo and then there's St. Luke's hospital, I go to my pulmonologist there . We have some behavioral therapy and cognitive therapy also. I'll have to see if my neurologist has gotten a hold of any. Thank you for your response

@waterwoman9 http://www.reactivept.com/

@galere Hello, our daughter was diagnosed with FND three years ago at the age of 39. She had just had her second baby and he was eight months old. We thought she was going to die, she had so many episodes that were like strokes and seizures, then inability to talk, loss of motor skills, balance problems, etc. It kept changing up and was very frightening. Thankfully, she got a diagnosis in four months, which is pretty amazing for FND. Just with the diagnosis, there was a notable relief in the symptoms because anxiety accelerated it. She still deals with episodes when she’s tired and doesn’t get a good night’s sleep or has a lot of stress, and she also deals with sensory overload and has to make accommodations for that. She now has her third child, an eight month old baby, so we can definitely say things have improved!

So what I wanted to relate is that Neuro Feedback helped her.
Fortunately, there was a nearby treatment center. I think they may be able to refer to other places in the country. She did pay out-of-pocket, and it was totally worth it. Interestingly, I had a stroke last October, and deal with so many of the same symptoms, that I am in Neuro feedback right now and it is helping tremendously.

The local neuro feedback center is called Neurotopia, in Atascadero, California. You can probably find it online and get their number. I’m not sure what we’re allowed to post here, since it seems like a referral. I’m receiving the treatments through a speech and language therapist, and it is actually being covered by my Medicare insurance! The speech and language therapist was trained by the owners of Neurotopia.

These are just our experiences and my thoughts. I hope you can find your way to some relief!