FND Awareness Day UK 2024 | Professor Jon Stone | Hiding In Plain Sight

FND Awareness Day UK is on the 25th March. Each year we collaborate with other FND charities to host an online event with guest speakers, and this year our 3 sessions revolved around the theme #Thenandnow.
This session was presented by Professor Jon Stone, FND Specialist Neurologist. Please see our other video presentations for the 2 further great speakers.
A copy of the slides are available to download through our website here: www.fndaction.org.uk/wp-conte...
#fnd #fndawareness #functionalneurologicaldisorder

[@hollywalker775]

Thank-you Dr. Jon Stone. In the world of FND is a massive advancement to receive a reliable diagnosis and to have compassionate care within our medical communities. Your work has helped to make that possible

[@lizzie88972]

Thank you for this recording. I'm getting fed up with some medical professionals and non-medical people saying. It's psychological, it's curable, you just need to think positive or just remap your mind! Some people may have been completely cured, but I haven't. 10 years ago, mine started as dystonia in my left hand and now my left leg is affected. I have been to a specialist neurologist, tested for MS and Parkinson's and now have an FND diagnosis. I had to fight to see a FND Specialist and for a neurophysio appointment and I do the exercises everyday, they don't cure me, only help alleviate some symptoms. I'm now needing a wheelchair. I can no longer work because of regular migraines, dizziness, fatigue, balance, falling and dystonia. I'm house bound, as I can't walk far. FND needs more recognition in the world and medical professionals need to take it seriously. If in the UK more NHS funding is needed. At the moment (in my area of the UK) the one FND Neurologist does not offer follow up due to the amount of referrals they get. For something that is meant to be the most common neurological condition, it's disgraceful that it's not recognised and therefore causes needless suffering to many. I recently saw on my medical notes a diagnosis of psychological conversion disorder! I was very annoyed at the word "psychological" that my GP decided to put on my notes as this isn't true one consultant said it was conversion disorder, but didn't mention psychological . I have asked my GP to remove the word. I advise anyone to check your medical records for accuracy, you have a right to and ask for anything untrue to be removed!

[@SusiBrown]

Excellent talk!!!!! Thank you for making this recording available for all.

[@vittoriasmith6586]

I wanted to mention something so important to how much medical trauma that I have now. Because of not only by the way I was treated and dismissed. In 2019, I was locked up in a psychiatric ward with so many symptoms of FND. I kept crying and trying to tell them that there is nothing wrong with me mentally. There is something wrong with me physically. They couldn’t care less about me, other than to give me so much psychiatric medication’s. Now, I refuse to go to the ER when I know it’s FND related. Sending healing ❤️‍🩹 hugs to my fellow FND warriors.

[@fndaction]

We can still share your story 💜 www.fndaction.org.uk/our-stories/

[@vittoriasmith6586]

Thank you Professor Jon Stone, for your dedication towards us that suffer from FND. You have validated me in many ways. My FND started in, 2018 and I have been labeled with so many insulting words. That I started to question my own sanity. I am from the, United States and it took two years to get diagnosed. I was given the Hooves Test and handed your website. She also said to me, “oh by the way, there is no cure for you and or medications”! I was sent home with a diagnosis that I have never heard of. I have never felt more alone and yet again to be abandoned by, the medical community. The silver lining is that I found a wonderful support group. We learn so much from each other to be as helpful as we can. 💙🧡 Thank you again for bringing awareness to one of the misunderstood and debilitating disorder.

[@dionysusapollo]

I have been told I have a functional gait disorder due to a sensory processing disorder that I always had. It makes it hard to walk in busy, visually stimulating environments. Also my gait sometimes improves in a manic/hypomaniac bipolar mood. Any explanation for this? I know sensory processing disorders are common in bipolar and schizophrenia.

[@dionysusapollo]

Do antipsychotics work for fnd?