Join a Community That Understands You

Get answers from those who share your health journey

Left Image 1Middle Image 1Right Image 1
avatar

KabdiSystem

Updated 1y ago

Just diagnosed with FND, feeling lost and alone

I just got diagnosed with FND yesterday after 2 years of severe illness, consistent testing and medical help, and straight up desperation to find out what's wrong with me. it finally makes sense. that said, with the highest estimate being that 0.012% of the population have it or, based on a 8 billion person population 960,000 people have it worldwide, this is by the far the least common disorder I have. my therapist didn't even know exactly what it was when my test results showed it. in so much of my journey to remission I've used infromation and education to cope with, recognize, and manage my symptoms, but for the first time I'm faced with a very very under researched disorder, and not just that, and extremely small amount of people who have it. What should I do, and where should I start?

Can you help? Connect today

avatar

needhelp

2y

Hi I have been to Dr after Dr for over a year a neurologist finally said he thought that this is what I have!! I'm waiting to get into a program and physical therapy!! Do they have an actual test to confirm that it's FND?? Any information would be greatly appreciated!! I'm basically disabled at this point it keeps progressing and no one could give me any answers
avatar

KabdiSystem

2y

I have severe dissociative disorders (DID among others) and the massive screening I did for that included testing for FND, although I had no idea at the time and my therapist didn't even know what it was. Dissociation is a symptom of fnd so the tests were combined (it also tested for BPD and other such things). My therapist then read a 100 page manual to interpret the results. I have been struggling for two years with severe and worsening chronic illness, been seen by my doctor every two months or more throughout that time, and have been thoroughly tested for other illnesses and disorders. The test found those answers on it's own but my experiences and medical history confirmed it. Does that help? Also please feel free to message me I would absolutely love to talk to someone with shared experiences as it's so rare even in the disabled community.
avatar

wise

2y

I think you are the first person I've ever encountered who was grateful for a diagnosis of FND lol. everyone else (myself included) was upset and felt it didn't line up with their symptoms at all
avatar

KabdiSystem

2y

Really? Having only known for such a short period of time I guess most people just felt similarly to me. Is it because you only experienced some of the symptoms or had been ignoring them or was it another reason? /genq. I want to know more about the community and how this affects others
avatar

Pugmamma

2y

I find it crazy how the umbrella of dysautonomia has so many comorbidities I mean the cross over of symptoms just a constant checklist for me but fnd is me completely

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

feed-footer-0

Free unlimited access

to all community content

feed-footer-1

Find others who are

medically similar to you

feed-footer-2

Pose questions and join

meaningful discussions

pp-logo

Alike is a transformative platform that goes beyond just bringing together patients; it meticulously connects individuals based on multiple critical factors, such as age, gender, comorbidities, medications, diet, and more, fostering a community of knowledge, support and empathy.

appStoreBtngooglePlayBtn

© 2020-2024 Alike, Inc