Thank you for this. I have just been diagnosed with FND. The doctor at the hospital offered to let me speak to the psychiatric team & gave me a website to look up, then sent me home. I have never heard of this condition before but luckily I have a very loving family who are caring for me. Unfortunately it has scared them to death but I think we will just have to find a way to live with it.
Thank you Jon for all your hard work on FND and spreading your learnings. Thank you for sharing NZ FND support areas, they have been a challenge to find
Best talk I’ve heard on FND. Thank you. I was referred to a neurologist for seizures & tic/spasms. She told me “your tests are all normal. There is nothing neurological wrong with you. It is likely just psychosomatic”. Since then my condition has worsened. My GP ran all the tests to rule out everything else it could possibly be. Both my GP & psychologist believe I am suffering from FND. Seems there are plenty of specialists & clinics claiming to treat FND, but finding a neurologist and/or psychiatrist to diagnose it/you is near impossible in Melbourne, Australia. Those recommended on the FND Hope website state on their own website they specifically treat but do not offer diagnosis of FND. How can you get treatment if no one is willing to diagnose you?
This is brilliant! So grateful for all the work Professor Snow has done on FND, educating + raising awareness + simplifying the story (if that is at all possible) + helping me & so many with this debilitating, scary + mentally lonely illness. Thank you for joining the FND Revolution to raise importance to this illness & helping so many of us not feel so removed from society 🫶⭐
Thankyou for sharing this...the proof that my brain DOES NOT WORK THE SAME WAY AS EVERYONE ELSE'S ❤ (re: Green Noodle, Brainstorm) I wish neurodivergent individuals were seen and heard in every space possible and given the respect & dignity that every soul on this planet deserves Xx All LOVE Always 😊💕✨️
Prof. Jon Stone’s presentation on the topic is excellent. FND patients are not being supported by the medical system, schools, the government nor within the legal domain. FND is a highly neglected and often mistreated patient population. The medical system has failed FND patients repeatedly through false accusations and ridiculous theories, generations of patients have been herded toward psychiatric, patients continue to be told the cause of the condition is the patient’s own false illness beliefs or that they just need to manage their stress better and that it is not a serious condition, their disability is rarely deemed valid in the eyes of clinicians or benefit programs. Patients often face severe financial insecurity in addition to disability because they cannot access timely rehabilitation centres that are trained on the condition, they cannot work and their applications for disability benefits are often rejected. FND remains in the DSM today and most patients are only offered psychotherapy, antidepressants and anti anxiety meds as an option for treatment. This approach is ill suited for the majority and leads to poor prognosis. The harm this has caused is immeasurable.
Jon, are you comfortable with or do you ever use the terms "functional drop attack", "cryptogenic drop attack", or "ideopathic drop attack" to describe any symptom or condition of repeated inexplicable falling while not losing consciousness?
Do we think that people with hyper-mobility are more likely to have FND? Or is it possible that EDS causes stretching of the neural and brainstem tissue due to CCI mimicking FND? Are people with EDS less likely to get better? That might be an indicator it's less likely to be FND.
Why are so many people being diagnosed with FND all of sudden and left to it Personally I don’t think it is FND the neurologists are using it as the easy option
Thank you for this. I have just been diagnosed with FND. The doctor at the hospital offered to let me speak to the psychiatric team & gave me a website to look up, then sent me home. I have never heard of this condition before but luckily I have a very loving family who are caring for me. Unfortunately it has scared them to death but I think we will just have to find a way to live with it.
Thank you Jon for all your hard work on FND and spreading your learnings.
Thank you for sharing NZ FND support areas, they have been a challenge to find
Best talk I’ve heard on FND. Thank you. I was referred to a neurologist for seizures & tic/spasms. She told me “your tests are all normal. There is nothing neurological wrong with you. It is likely just psychosomatic”. Since then my condition has worsened. My GP ran all the tests to rule out everything else it could possibly be. Both my GP & psychologist believe I am suffering from FND. Seems there are plenty of specialists & clinics claiming to treat FND, but finding a neurologist and/or psychiatrist to diagnose it/you is near impossible in Melbourne, Australia. Those recommended on the FND Hope website state on their own website they specifically treat but do not offer diagnosis of FND. How can you get treatment if no one is willing to diagnose you?
This is brilliant! So grateful for all the work Professor Snow has done on FND, educating + raising awareness + simplifying the story (if that is at all possible) + helping me & so many with this debilitating, scary + mentally lonely illness. Thank you for joining the FND Revolution to raise importance to this illness & helping so many of us not feel so removed from society 🫶⭐
This was the best find on FND. Thank you 🙏🏻
Thankyou for sharing this...the proof that my brain DOES NOT WORK THE SAME WAY AS EVERYONE ELSE'S ❤ (re: Green Noodle, Brainstorm) I wish neurodivergent individuals were seen and heard in every space possible and given the respect & dignity that every soul on this planet deserves Xx All LOVE Always 😊💕✨️
Prof. Jon Stone’s presentation on the topic is excellent. FND patients are not being supported by the medical system, schools, the government nor within the legal domain. FND is a highly neglected and often mistreated patient population. The medical system has failed FND patients repeatedly through false accusations and ridiculous theories, generations of patients have been herded toward psychiatric, patients continue to be told the cause of the condition is the patient’s own false illness beliefs or that they just need to manage their stress better and that it is not a serious condition, their disability is rarely deemed valid in the eyes of clinicians or benefit programs. Patients often face severe financial insecurity in addition to disability because they cannot access timely rehabilitation centres that are trained on the condition, they cannot work and their applications for disability benefits are often rejected. FND remains in the DSM today and most patients are only offered psychotherapy, antidepressants and anti anxiety meds as an option for treatment. This approach is ill suited for the majority and leads to poor prognosis. The harm this has caused is immeasurable.
Jon, are you comfortable with or do you ever use the terms "functional drop attack", "cryptogenic drop attack", or "ideopathic drop attack" to describe any symptom or condition of repeated inexplicable falling while not losing consciousness?
what if I heard "Greenstorm" when my eyes were closed?
Do we think that people with hyper-mobility are more likely to have FND? Or is it possible that EDS causes stretching of the neural and brainstem tissue due to CCI mimicking FND? Are people with EDS less likely to get better? That might be an indicator it's less likely to be FND.
It's the autism ADHD what causes the heds I have all fybromyalgia CFS elements fnd and how much us autistic burnout
Starts at 3:03
Why are so many people being diagnosed with FND all of sudden and left to it
Personally I don’t think it is FND the neurologists are using it as the easy option
Lazy
Lost voice 2years and pronounce words.