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Functional Neurological Disorder (FND); Anyone have FND?
I was originally diagnosed with Parkinson's Disease nine years ago. The first neurologists I saw said that, based on my symptoms, they were quite certain I had PD. When I finally had a DaTscan done at the VA and it came out negative, they pretty much told me to "get lost." After that, while not improving: severe tremors (hands and feet), slow shuffling gait, trouble talking and swallowing, blurred vision, and other Parkinson's symptoms. For the next 4-5 years, I went from neuologists to mental health clinicians and back, often being told my problem was "all in my head." Finally, about a year ago, one of the chief neurologists at Stanford University diagnosed my with having Functional Neurological Disorder. My brain sends incorrect messages to my body, and my symptoms will worsen whenever I get stressed. The S.F. VA is currently researching FND, but the earliest appointment I could get with them is more than a year from now.
Does anybody else have this diagnosis, and how are you handling it?
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I’m so sorry the system is failing you. No one should have to wait and suffer for a year before getting an appointment. I will keep you in my thoughts and pray for a quick treatment plan
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1 ReactionSadly, this is becoming the norm for healthcare in the U.S. Fortunately, for me, I'm a veteran and have access to cutting edge medical technology (only at certain VA Hospitals--and I'm relatively close to the Palo Alto Hospital which is adjacent to Stanford Medical, and also the S.F. VA Hospital which is also an excellent hospital where they're currently conducting research on FND). Unfortunately, the wait times are growing ever longer, thanks in part to staffing cuts made by our present administration who believe it's more important to start needless, $multi-Billion dollar wars than to provide for the needs of the more than 90% of working Americans struggling to feed their families, access affordable housing, provide higher education and hope for their children. I volunteer for a Veterans Service Organization helping to keep the government from privatizing the VA--a way to siphon money into the hands of oligarchs. Thank you for your reply and concern. It helps to know there are still good, caring people out there--the people whose positive actions most help to keep society alive and healthy.
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2 ReactionsI think I have that I haven't been formally diagnosed because many doctors don't really know about that. There is a place in California called re-active physical therapy. I think that you can look it up on a website. They treat only FND and they have a whole program. They also have an online program so you might want to Google. It do a webinar on FND so it's interesting.
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1 ReactionBealillie, thank you so much for referring me to this program. I've already signed up for an online, 1-hour, intro FND course taking place this afternoon. I believe I've come across this site in the recent past, but this online webinar wasn't mentioned and the location is in So Calif and I live up in Northern Calif. I'm looking forward to seeing what they have to offer--couldn't hurt. Thanks again.
@nahyduk The system is failing far too many people who desperately need adequate healthcare. A small small rural hospital an hour south of where I live, recently shuttered, forcing Medicaid residents who can't afford to pay cash to see doctors (probably most of them, as most residents are farm workers) to commute to Salinas, CA--an inconvenient drive and a day long bus excursion. That's why I'm volunteering my service to keep the VA alive and well and serving to meet the needs of our veterans. I appreciate your reply.
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1 Reaction@bealillie I was originally diagnosed with Parkinson's Disease while living in Brazil. After settling back in CA, I saw a highly respected (and expensive) neurologist several times who told me he was 95% certain that I had PD. After taking a DaTscan with the VA some months later and testing negative, I was told to see neurologists who then referred me back and forth from neurologist to mental health professionals. This went on for several years until I saw the Chief Psychologist at Stanford Univ Medical, who diagnosed me with FND. His advice: don't get stressed out. It will worsen your symptoms. That was after hearing from other health professionals that, "It's all in your head." Doctors are reluctant to diagnose FND, so you need to document your symptoms and be persistent. Good luck to you. I've heard from others who have experience the same runaround as me. I hope you have better and faster results.
@horowitz71, you may also be interested in these related discussions:
- Is there anyone else being diagnosed with FND and can't get help? https://connect.mayoclinic.org/discussion/is-there-anyone-else-being-diagnosed-with-fnd-and-cant-get-help/
- Functional Neurological Disorder (FND): https://connect.mayoclinic.org/discussion/functional-neurological-disorder/
@horowitz71 I worked at VA medical center for a number of years. The wait time for appointments can be long unfortunately that's why they refer vets to civilian doctors. I have MS and have had it for 20 years. Your symptoms sound alot like MS. Neuro disorders and auto immune disorders can be difficult to diagnose and similar symptoms. I have a friend with Lupus and we sometimes have similar symptoms but very different diseases. I wish you well.
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2 Reactions@ladybugg I had an amazing support group, MS-PD / Monterey until the group ended at the start of this year. We had water classes twice/wkly, took field trips, had online art therapy classes, and exercise classes given by local volunteers. I truly miss the social interaction, one of the keys to keeping the illness from progressing. Although several of the MS members were no longer able to walk, they were always upbeat; one woman had been a former Olympic swimmer, another a competitive skier. Having been an athlete my entire life, I left each class feeling more positive and hopeful. I enjoy my daily walks (usually with a cane, but on not-so-good days, I cruise along with my walker. My wife works online from home and our cat chips in as a support member. I do the cooking and cleaning around the house, but the kitchen's starting to become a danger zone--frequent slices and burns. The VA used to have a decent supply of community care doctors, but as the local healthcare groups began to merge, it's become difficult to find local doctors who accept new patients. Still, the VA remains one of the finest healthcare programs in the U.S. (depends on the region, however). Thank you for your reply. I feel better whenever I get to hear other people's stories. Here's a former Army major I met at the local VA clinic 2 days ago; not a Vietnam vet, but has a friend with PD who's supposedly having success using micro-dose CBD. I tried gummies, but didn't care for them. And I've stopped using most of my pharmaceuticals and am feeling better than when I was taking all the recommended PD drugs.
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2 Reactions@itsmeagain
Yes, I’ve had that diagnosis. I’m never sure if it’s fnd or CIDP that’s driving me but there’s a lot of logic to it. It’s still driving me crazy though. Balance problems, can’t manage my wheelchair very well, but in my defense I share a room in a nursing home and it’s difficult to get around at the best of times.
At any rate as my actions/reactions change from day to day I just have to wonder about it all. My brain seemed to do well all my life but now, why? I’m pretty sure my Covid vax had something to do with it all.
It all began just after the second shot. Don’t think it’s fair we should have to go through all this but then nobody promised me a rose garden.
God bless us.