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KabdiSystem

670d

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?

Top reply
    • Pugmamma

      643d

      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

    • Pugmamma

      643d

      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

    • wise

      664d

      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

      • KabdiSystem

        662d

        @wise 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

    • needhelp

      665d

      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

      • KabdiSystem

        664d

        @needhelp 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.

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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