Functional Neurological Disorder (FND)

My ENT doctor just a Balance test at the hospital for me. I started having episodes ov vertigo. This will help with a baseline. I have a meningioma.

I am sorry about your meningioma. Do they think it may be causing the vertigo?
I don't have vertigo or dizziness. My body actually moves [a body sway] involuntarily.
Best of luck with your vertigo/balance. Vertigo can be one of the hardest things to diagnose.
P

I went for the balance test today and after she explained what was going to happen, I said no way. I have vertigo and have to sleep on two high pillows to keep my head up. She was going to have me lay flat. I had a terrible event that happened to me during a vestibular exercise. She shook my head after she had me lay on my side to get crystals in ear back in place. Next day in am threw up for 2 days, fell to floor and ended up getting tinnitus. Thus lady was going to move my head in different directions. No way, I was going to let her move my head after what happened in therapy. I left. My ENT doctor understood. I don’t think anyone with a brain tumor should try to do things that aggravate your brain.

I have been diagnosed with a Functional Neurologic Disorder, also called Functional Movement (Psychogenic) Disorder caused by taking a single dose of Sertraline (Zoloft). I had extreme anxiety and panic attacks, with uncontrolled leg, arm and body movements, stuttering and an extreme startle response. Unfortunately, I was advised that the facility where I was diagnosed, UofL Physicians Neurology in Louisville KY, no longer has a program to treat the problem. I was prescribed 300mg of Gabapentin 3 times a day (which has helped with the symptoms) and advised to contact either Vanderbilt in Tennessee, a 3 hour drive from where I live, or The Mayo Clinic an 11 hour drive from where I live. Both of these Medical facilities require in person initial visits, which is understandable. The problem is that ongoing treatment would need to be via Video. Vanderbilt will only provide video visits to residents of Tennessee and The Mayo Clinic will only allow video visits if the treating physician is registered to practice in your own state, which in my case is Indiana. So herein lies the problem for so many patients who need treatment for a condition which is not available in their own State. What do we do and where can we go for treatment?

@wilmslow
Sorry to hear you're having psychogenic seizures..
Are you seeing counselor?
Here are some members of the Mayo Clinic network in Indiana.

Beacon Health System

Hancock Health

Hendricks Regional Health

Johnson Memorial Health.

All the best,
Jake

I was diagnosed with FMD - FND at University of Louisville Physicians - Neurology (KY) Unfortunately they no longer provide treatment for this condition other than prescribing 300mg Gabapentin three times a day and suggesting I contact The Mayo Clinic or Vanderbilt.

Thank you for the information. I was not aware that the Mayo Clinic had any associated locations in Indiana.

Thanks for pointing out the affiliated hospitals of the Mayo Clinic Care Network, @jakedduck1.

@wilmslow, the Mayo Clinic Care Network is a select group of independent health care providers, carefully vetted by Mayo Clinic. Their clinicians are granted special access to Mayo's clinical, educational, research and operational knowledge, expertise and resources. And most important, it provides patients the care they need, closer to home.

Here's more information https://www.mayoclinic.org/about-mayo-clinic/care-network/more-care-close-to-home

Mayo Clinic itself has several locations, including Rochester, MN, Jacksonville, FL and Phoenix, AZ. If you would like to see Mayo Clinic experts, you can request an appointment here: http://mayocl.in/1mtmR63

I was diagnosed in October after two years of visiting Mayo Clinic. They do have a very good program called the.BeST program and I am blessed to have been admitted to that program and start the five day Boot Camp on May 12. And we’re also fortunate to only live about five hours from the Mayo Clinic. It still is a long drive and we have to stay overnight one to three nights depending on the appointments. But I’m so thankful to be close enough to receive their care. I will keep you posted on how the treatment program goes next week. As I said, it’s a Boot Camp type program one week of very intensive therapies, mostly PT and OT. 🙏🙏

Exactly. It used to be called conversion disorder which meant it could be just psychosomatic but now a days it means there are physical symptoms but they could be manifesting by stress or some other reason that hasn’t been found yet. So at least they’re not outright calling someone crazy, making it up or a hypochondriac. I’ve had seizures since childhood and was in meds for years. I got a new young dr and he changed the diagnosis to this. I got another opinion of a doctor with a lifetime of experience and he diagnosed me with seizures as have all of my other neurologists I’ve ever had. So I’d say find a new doctor